Never Give Social Workers Tea

Never give social workers tea

A guide to surviving a Rett diagnosis Produced by Reverse Rett and illustrated by Hazel Bee

This booklet has been produced with the generous support of the MBNA Foundation.

Making life easier – bringing parents together.

Acknowledgements

Contents

This booklet was designed and printed with a generous grant from the MBNA Foundation with much appreciation to Gayle and Neil Fowler and was written and edited by Rachael Stevenson, with contributions from Helen Simmonds, Beth Johnsson and Jennie Simmons. Special thanks to Sarah and Marc Starbuck and Jenny Thompson for being brutally honest first readers.

You are not alone .................................................. 4 Early Days: things to help you ............................. 6 Reaching out .........................................................12 Early days: things to help your child ................. 13 Living with Rett - Day to day ............................ 16 For those who have other children .................. 22 What extended families can do to help ............24 Key questions ...................................................... 29 Reverse Rett - What we do ................................. 31

Deep appreciation to Hazel Bee for giving freely of her time to provide the illustration for this booklet.

Much gratitude and respect to all the parent mentors who have given their time and energy to being part of Reverse Rett Parent 2 Parent despite the inherent difficulties of their own lives. You make the real difference at the time it matters most. Thank you.

This booklet was designed by smbdesignworks.co.uk Additional copies of this booklet can be obtained by emailing us at enquiries@reverserett.org.uk or calling 0161 434 8117.

Copyright Š 2016 Reverse Rett

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A Rett diagnosis is devastating but you are not alone No one can tell you they know how you feel. Your experience and feelings are your own and no one in any situation, however similar, wakes up in your skin except you.

But many of us who have a daughter with Rett have felt desperate. Many have felt helplessness in the face of this diagnosis; wanting to be able to do what we can to help our child live the best life possible, despite the challenges that this diagnosis brings.

The good news is that you are not on an unbeaten path.

A Rett diagnosis is overwhelming, not only for what it might mean for the future but on a practical every day level as well. But there are those who have gone before you.

Reverse Rett is a parent-driven organisation, founded and still run by parents and other family members of children with Rett Syndrome. With the help of other families of children with Rett Syndrome of all ages, We want to share with you some things that we hope will be useful to you, to your daughter and to your whole family right now.

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In this age of information overload, this is not intended to be a comprehensive guide to coping with a Rett diagnosis, or to managing your child with Rett Syndrome. This guide has been written heart-toheart, from people who have stood where you stand now and only contains the information we hope will be of most use to you, now, in the wake of a new diagnosis. You should always seek professional advice from a doctor if you feel it is necessary.

If you have questions or concerns which are not answered herein, we can be contacted at the Reverse Rett office at any time. If you don’t have questions or concerns but just want to reach out, please do call or email, any time. You are not alone.

From all of us at Reverse Rett.

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Early Days: Things to help you In the early days following diagnosis, the information you receive can become overwhelming. On top of the emotional rollercoaster, you have been thrown into a situation where you are often expected to be the person coordinating everything your child needs while you are still trying to get to grips with what that is yourself.

Here are a few suggestions of things that can help you get through this:

Say yes to help People in situations like this often feel like they should be able to sort everything all on their own. The guilt at having lost control of what is happening to your child often makes you feel that you need to control everything else.

Help is available from people who are not going through the personal nightmare you are dealing with. So when help is offered, say yes.

Remember who you are It is relatively unusual to meet a professional who says ‘oh yes, I know all about Rett Syndrome’ and you may not feel that you have all the information you need.

But, you DO know your daughter and your life. Don’t be afraid to tell a professional that you know your daughter best or to question what they say. You are the expert on your child.

Train your autopilot It’s easy to be thrown by questions or enquiries from professionals, family, friends of even strangers. ‘What is Rett Syndrome? What does your daughter have?’ or even, ‘What’s wrong with her?’ can be difficult to answer when you are caught off-guard, or when you urgently need the listener to appreciate your situation within the first two sentences.

Find a line or two which work for you and practise delivering them on autopilot so you can pull them out when you need to.

Here are some examples: e.g. “This is Amber. She has Rett Syndrome and is going through regression right now which is very difficult for both of us. We appreciate your patience.”

“This is Eliza. She has just been diagnosed with Rett Syndrome and we are both still trying to adjust. Thanks for your patience.”

“This is Harriet. She has a neurological disability which means she gets very upset sometimes and can’t follow directions and can be disruptive. It will help me if you can… (open the door/pass me my bag/carry my shopping to the car.)”

Of course, mentioning Rett Syndrome means people sometimes ask what that is, or worse, what it does.

Tell them to Google* Reverse Rett and leave them to it. *Other search engines are available

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Be prepared Before appointments, write down the questions you want to make sure you ask and don’t leave the room until you’ve asked them all and been given answers that satisfy you. Remember that consultant appointments can be six monthly or more, you may have a long wait for the next opportunity to ask your questions.

Avoid filling in forms Forms are a necessary evil but they don’t always have to be filled out by you. If someone offers to help you with filling out a form or making an application, let them help.

The purpose of most of these forms is to improve the quality of life of your daughter, and the level/standard of service you receive will depend on how bad your daughter’s condition appears to the assessor.

This means repeatedly spelling out negatives about your child which can be a soul destroying experience.

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The Disability Living Form (DLA) is one of the most difficult forms to complete.

If you are going to complete a form like this yourself, try to remember that the system is based on dire situations and you are in one.

Being brutally honest is not betraying your child or being negative, it is the only way to get your child or your family the help you need.

Never give social workers tea Once you are able to get services up and running, you may find that several different specialists and professionals will visit you at home to help ensure that your daughter gets the help she needs.

For therapies or portage it can be useful to be positive and welcoming.

Getting this sort of help is dependent on your level of need. If you want the help, show them your need is high.

Don’t tidy up or make them tea. As hard as it is to do this, you need to give them your worst-case scenario.

If you appear to be coping just fine, why would you need help?

Some visitors will be assessing your need for respite and other needsbased support. These people need to hear about your most difficult days, not your best days.

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Copy/jpg everything Got an appointment letter in the post?

Take a picture with your smartphone.

Then you will always have what you need with you when flustered getting to an appointment.

Copy those completed forms. There will be more forms to fill out, asking more of the same questions. Copying the first one will save you going through it all again. Stuff also gets ‘lost in the post.’

Take extra copies of birth certificates and other documentation about your child so you can replace or send out in a hurry without much effort.

Don’t read everything There is so much to learn about Rett Syndrome. Not all of it is applicable to you now and some of it may never be relevant to you.

It can be helpful to just read what you need to know now and leave some stuff for later. For example, your child may not have scoliosis now and may never have it, so flip through that section. And no parent of a three year old wants to think of their baby having periods, so why would you?!

Remember your is still in there

daughter

Your daughter might be going through a lot right now but before she is anything else, she is still a little girl of the age she is.

Talk to her as if she can ask the questions she would ask if she wasn’t being hampered by this situation. Cuddle her if she will let you. Before she is anything else, she is your masterpiece and she needs to know it.

Don’t believe everything you read!

There is a lot of information out there about Rett Syndrome and not all of it is accurate. When reading information on the internet, always consider the source. These days it is easy to make anything look official with a logo and website. Whatever you’re reading, ask yourself ‘who wrote this?’ What is their background/experience/credentials?

Are they a formal organisation? Is this up to date information or something written in the 60s?

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Reaching out Once you’re ready, be aware that other parents who have walked in similar shoes may be better equipped to answer your questions and give you ‘work arounds’ for things that no one else can.

When you are trying to figure out which car seat will be best, which adapted seating works well or how to manage constipation, other parents are often a great source of information and practical advice. Their experiences can also be a useful form of evidence when discussing options with the professionals – knowing another family who have successfully used this seating, for example, can help persuade an OT to let you try it out too. There are a number of ways you can connect with other parents on-line or through a variety of organisations.

At Reverse Rett, we can link you up with a parent who has been through a Rett diagnosis and who can lend a listening ear and give advice if you need it. Just go online at reverserett.org.uk or give us a call on 0161 434 8117 and ask us about our Parent 2 Parent project.

Early days: things to help your child When your child is diagnosed with a condition such as Rett Syndrome, you can very quickly find yourself on a steep learning curve, at the same time as trying to juggle the logistics of your life, while you are trying your utmost to hold onto some semblance of normality.

You might find that you are going to many appointments or having frequent home visits from different professionals. Here are some practical things you can do to help you feel a bit more in control.

Set up a filing system ĆŘŘEnsure that you can easily find specific paperwork you need relating to your child’s needs. Sections to include could be: ĆŘUpcoming appointments ĆŘEducation ĆŘCommunication ĆŘMedical letters ĆŘBenefits ĆŘComplete and update the Professionals Contact Sheet in the back of this book as and when a new person gets involved with your child.

As well as being an easy reference for you, you may find yourself becoming the centre point of your child’s teamprofessionals will often expect you to pass on information about other professionals involved. Having it all in one place will help.

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ĆŘVideo any small changes in your child using your phone or camera. These are invaluable when trying to explain changes to health professionals. ĆŘKeep a record of any unusual symptoms or difficult days, make notes with particular observations and dates. ĆŘŘWrite down questions or queries you may have as you go along so you don’t forget to ask when it comes to appointment time and don’t be afraid to ask them. ĆŘŘExplore local resources/groups in your local area for early years special needs and inclusion programs. Your local borough council is a good place to start, either in person or by looking at their website.

Direct family and friends to the Reverse Rett website It can provide them with information about the condition, research and the potential for treatment which they may not feel comfortable about asking you directly: www.reverserett.org.uk

ĆŘŘBe aware that a lot of help available doesn’t have to be Rett Syndrome specific.

Get familiar with other charities such as Cerebra or Contact-A-Family. These may not be directly linked to Rett, but they still provide a host of supportive materials. ĆŘLook into the benefits you and your child are entitled to. Disability Living Allowance and Carer’s Allowance are amongst those you might qualify for. You can find comprehensive information about the benefits you are entitled to by searching the Internet for Contact-A-Family benefits advice. ĆŘMotability and Blue Badge schemes can help you with a vehicle and accessible parking.

And one more time: Say ‘yes’ to help when it is offered.

Even if it’s just someone opening the door for you.

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Living with Rett Day to day

Set your home up so it works for her

What can I do to help her?

If your daughter is not mobile and you are trying to encourage more movement, standing or similar, it can be helpful to create space to enable this to happen.

Sometimes motor planning in girls with Rett can be affected by a busy environment, too much stuff on the floor or furniture to navigate.

Girls with Rett Syndrome usually have a variety of health issues that need intervention. The greatest advantage she has is you. The fact that you are reading something like this means you are doing the best you can to help her. Here are some things you can do to start making her life easier:

Listen to her

Get down to her level and look at her eyes. Many girls with Rett go on to be able to communicate with eye gaze equipment which can control a computer. It will help if you can validate eye gaze communication as early as you can. Look at her eyes, talk to her about things that hold her gaze. Watch her expressions and responses, look for and reinforce consistent responses to questions to try to help her with developing a consistent ‘yes’ and/or ‘no’ response if possible.

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If your daughter is able to move about by herself, she might be into wrecking things. Rearrange your home so that this does not repeatedly cause you extra work. Some families with younger, mobile children have found it helpful to gate off certain areas of the house for safety and sanity purposes.

Set your home up so it works for you Your child is likely to need help with day-to-day activities like eating, walking and toileting/changing.

Arrange your home so that you have the things you need at your fingertips wherever you need them.

Keep an abundant stock of vital items, anything that could tip you over the edge if you run out of it, i.e. wipes, the only juice she will drink, straws, calpol, coffee/ wine, whatever gets you through.

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Don’t just put up with difficult symptoms

Make sure she is eating and drinking enough

Your daughter might have difficulty with things like sleeping and regular bowel movements.

Many girls have trouble drinking enough fluids which can add to the aforementioned tummy troubles.

There are medications and other strategies that can help with this.

Often, families of younger girls have problems with their daughter screaming or crying. It is important to make sure that there is not a problematic physical symptom causing this i.e. constipation, reflux or something else.

Many families find that it is particularly necessary to do something to help with tummy troubles. Speak to your GP about medications and strategies that can help with this.

It will also help you in the long run if you can try to find things that can soothe her, like a favourite TV show or particular music which could be played with or without headphones.

Some families worry about letting their child watch too much TV. It is useful if you can cut yourself some slack about things like this. Most children have other ways of entertaining themselves and more importantly, soothe themselves. Ours often do not. So, if Peppa Pig or Barney or any other TV show seems to do magic, use it when it is helpful and don’t beat yourself up about it.

Some girls also have problems gaining weight. To avoid malnutrition, it’s important to monitor your child’s food and caloric intake to make sure she is getting adequate nutrients. Remember to talk to your child’s doctor about any medications or special diets that you’re considering, even if they’re termed ‘natural’ or ‘herbal.’

This is a safety precaution but it should also alert them to developing symptoms. Some medications, herbal therapies, vitamin supplements or special diets might also be unsafe for your child, and some can be harmful if they’re not used properly.

Reinforce therapies at home where possible Your child should see specialists to help her develop and maintain skills: Speech-language therapy can help your daughter to listen, interact and express herself.

Occupational therapy can help maintain or even develop your child’s hand use and help her deal with sensory input from her environment.

Physiotherapy can help her maintain and develop her gross motor skills and mobility where possible.

It’s helpful to try to ‘practice’ or carry over therapy techniques at home but remember to take breaks. (Both of you.)

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Presume competence People with Rett Syndrome are often much more intellectually capable than they appear, but because they are unable to communicate or ask questions their learning sometimes becomes stunted, furthering the low expectations which are often set for them.

Sometimes people, even professionals, make assumptions about the understanding of people with Rett Syndrome based on their inability to follow directions. People with Rett Syndrome have a problem called motor apraxia or dyspraxia, which disrupts their ability to make planned motor movements. This is why your child may be able to scratch an itch or reach for a cup or cracker, but cannot point to something or pass you something on demand. Scratching an itch or reaching for a desired item is an instinctive movement whereas responding to questions or demands involves more complex motor planning which is difficult and sometimes impossible for someone with Rett.

Research has shown that eye movement is one area which is not affected by apraxia in Rett Syndrome. Because of this and because of the inherent difficulty most people with Rett have with using their hands and with motor planning, it can be beneficial for people with Rett Syndrome to use eye gaze technology for multiple purposes including communication.

It will be helpful for your daughter to become familiar with standard picture symbols at an early age and particularly for you to use them when you are speaking to her, so that you are modelling the use of this new language, in the same way that typically developing children learn by hearing spoken language all day every day.

You can find more resources to link to on the Reverse Rett website under learning and communication. Rett University also offer reasonably priced online tutorials re putting together communication books and similar which may help you.

Be sure to talk to your child’s SLT about what you are doing so that your efforts are aligned. Sometimes UK Speech Therapists have a set protocol for how children and adults with disabilities must move forward with using picture communication systems (or eye gaze technology). This often involves the sorts of consistent box-checking responses which are difficult for people with Rett Syndrome for a number of reasons.

It will help your child if you can get her accustomed to the new language of picture symbols, even if she doesn’t seem interested or responsive at the moment.

Print symbols off and put them around your home so that she starts to recognize the symbols in association with the things that are important to her, i.e. ‘food’ symbol on the kitchen/dining room door or ‘TV’ on the unit her TV is on.

Trust your own instincts about what your child knows and understands. Talk to her on her age level. Presume competence and expect the same from those around you.

This can often involve the use of picture symbols which your child can point to with her eyes and software which will then ‘speak’ the word she is looking at.

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For those who have other children Many parents find it helpful to share information about the child’s condition with siblings on a ‘need to know’ basis. Small children probably don’t need to know longer term info about Rett until they get a bit older. Be aware of conversations that happen when they are in earshot-and those which happen with your daughter with Rett around too. Most children are able to take in so much more information than they are able to emotionally process. Our children with Rett and their siblings are usually no different.

Talk to them It is easy to project our frustration and anger onto the child who does understand, who can make choices, when the one who can’t is the one who is overwhelming you.

It is important for you to be aware of this and to recognise it if and when it happens. Don’t be afraid to tell your child when you are feeling sad or overwhelmed. It’s ok to cry and ok to tell them you’re sorry if you go crazy over them wanting a biscuit when you are trying to settle their distressed sister down.

Like us, one of the things siblings often find hardest in this situation is the helplessness. They can often feel better if they are given something practical they can do to help.

Remember to tell them what a great help they are for you and their sister.

Make sacred time for them When you have a child with a high level of need, it is often necessary to prioritise their needs over your other children. There may be people who don’t feel guilty about this sometimes, but we don’t know any of them.

Most people muddle along and accept that different children, even those without disabilities, have different levels of need and demand a different amount of their parents’ time and attention. But it can be helpful to carve out a little bit of time each week which is just for you and your other child/children.

There will be times when arrangements or plans for them must be cancelled.

If you can have one short space of time for the two of you, which is ultimately sacred, this can make all the difference.

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I worried a lot about the impact that my daughter’s diagnosis would have on my other children. They are all quite close in age and were still little when she was going through regression and diagnosis. Obviously there are anxieties that they have about their sister that any mother would prefer her children to be shielded from but quite honestly there have been far, far more positives for them than certainly I ever expected. They have a relationship with their sister that is so close and so caring and they have developed a degree of empathy, which they apply in all aspects of their lives, that is unusual in young teenagers but which I now know to be very common in siblings of disabled children.

”

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What extended families can do to help

Helpful things you can do...

At Reverse Rett, we often receive calls from extended family members telling us that they feel useless in the face of a Rett diagnosis and aren’t too sure what they can do to help.

Ć One thing comes up time and time again is that the thing that matters most to families is that their daughter is accepted and loved by the rest of the family.

All families are different: different extended families will offer different levels of support and different people help in different ways. With the help of families living with Rett Syndrome today, we’ve put together a list of things they found helpful and not so helpful at the time of diagnosis and in the months and years that followed.

Even if she doesn’t look at you, even if she doesn’t or can’t respond, simple gestures, like always remembering to say hello to her, matter enormously.

Talking to her, rather than about her, and showing her physical affection will massively help the parents who are struggling to come to terms with what is happening to her now. Ć Regularly touch base, call, text or email. Just let them know you are there for them. Ć Go to meetings with the parent(s). ‘The day after the diagnosis, a friend came with me to take her to nursery and explained the situation to the room leader and nursery manager – I was a mess and this was a huge help.’ Ć Help with little things; bring a cooked meal around, buy take out, collect children/drop off at school/activities. Wash up. Offer to take bags of washing home. Ć Validate that things are difficult. Often, parents tell us that comments like ‘this is really #€*\’ are much more helpful than the usual ‘just think of all the things you do have,’ or ‘at least you have x (money, other children, your own health blah blah)’. Ć Accept that this is a major life event. ‘My mum and dad just kept saying, ‘things will get better.’ I wanted to scream…. ‘this is Rett Syndrome, so probably not.’ Ć Sometimes it can be better to say, ‘I don’t know what to say,’ than to say nothing.

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Not so helpful...

Pretending it’s not happening ‘It will all be ok in the end, you’ll see.’ Acting like this is something the family should or will, get over, or something that the child will get over in time.

Disappearing entirely

It might be hard to talk about and deal with, but the family still have to live with it, whether you are there for them or not.

‘Our daughter was diagnosed six months ago. Our families try not to talk about anything Rett, they will walk out of the room or change the subject mid conversation. Rett has become our life and whilst we don’t expect it to be theirs, some understanding would be good. I think that some family members are in denial and haven’t considered how we are feeling or what we are going through.’

In the long term: Include them in invitations to family meals, days out, occasions, but always think of the needs of this family; especially access requirements, timing (many children with Rett need consistent routines/meals at specific times etc.)

Ask the family what their needs are and what you can do to ensure that they can be accommodated comfortably so that everyone can be involved.

Acting like it’s happening to you It is difficult enough for the parents to cope with their own feelings about what is happening to their child and the implications for her future, without them having to carry the grief of other family members, however close you are. Parents may also have other children who will need additional love and support as a result of the diagnosis and they will need to focus all their energies on holding their immediate family together.

Understand when they say no. Sometimes things are just too much – especially social occasions where there will be other children of a similar age around, even if those children are family, i.e. cousins or nephews and nieces etc. But please don’t stop inviting, even if they say ‘no’ 99% of the time.

Sometimes it’s easier to take a step back when emotions are so raw. When a family is ready, they will be able to join in with everyone else again. Be sure to make this as easy as possible for them, however long it takes.

Phone a Friend Listen to the parents, empathise, share your concerns and ask questions but if you want or need to share your own sadness, phone a friend. The parents have enough of their own emotions to carry without carrying yours too

Focusing all attention on the healthy child Offering to take the healthy child/children out or to babysit for them is not that helpful. The child with Rett is the one they really need the break from.

Yes, she might be more difficult to look after but her parents have had to learn how to manage and you can too. Even the difficult bits, like changing an older child, can be overcome.

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Knowledge is power If you love someone, or love someone who loves someone with Rett Syndrome, one of the best things you can do to help is educate yourself about Rett, research and positive ways to show your support.

Nothing says you care more than if you have taken the time to find things out, instead of relying on the family to answer your questions.

They will be having to answer the same questions every day, so repeating the same difficult information to well-meaning family and friends may be draining for them.

You can find information about Rett Syndrome, research and how you can help drive the science forward on the Reverse Rett website: www.reverserett.org.uk

Hang in there!

Many times, families feel like they aren’t doing enough to help. The fact that you are reading this shows that you care a great deal.

Just do the best you can.

Key questions Fellow parents have identified some key questions they had before, during and after their child’s diagnosis. The likelihood is that, by this point, you know much of this information already, but it could be a useful resource to share with family and friends if they also need these questions answered.

What is Rett Syndrome and what causes it?

Rett Syndrome is a neurological or brain disorder which most often affects apparently healthy little girls around the age of 6-18 months. Early signs are autism-like behaviours with the loss of speech and hand use. Your daughter might stop playing or interacting normally.

Onset can be sudden or more subtle, where you can’t quite remember the last time she waved or said a word. She may have unusual hand movements when she is awake; in Rett Syndrome, hands are usually clasped or held together in the middle of her body (midline) or she may wring them together or move them from hand to mouth. She may have other problems, such as strange breathing patterns, screaming episodes or sleep disturbances.

Rett Syndrome is named after Austrian doctor, Andreas Rett, who first identified the condition in 1966. It is as about common as Huntington’s Disease, although not very well known and occurs in 1:10,000 live female births. The condition is most often caused by mutations or faults in the gene MECP2. This gene is on the X chromosome, which is why the condition most often affects girls.

The condition is not degenerative as it was once thought to be. Degenerative means that there is progressive deterioration of nerve cells, leading to cell death; this does not occur in Rett Syndrome. The condition does however, usually follow a path of progression, where skills such as speech, hand use and mobility are lost.

Most girls do not speak at all. Some have a few words. Some are left with some hand use. Some girls never walk, some girls learn to walk and lose it later and a few keep walking. There is no way to predict the severity of these different symptoms.

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Does she have brain damage?

Any human who cannot use their hands, speak, or move freely is going to have trouble convincing others of their understanding. But as more research into the underlying causes and mechanisms of Rett Syndrome are coming to light, it is more apparent that the cognitive abilities of people with Rett have been underestimated for decades.

Recent advances in teaching techniques and technology are also now enabling new perspectives and higher expectations of what people with Rett Syndrome can achieve both academically and with regards to their ability to make choices and have control in their lives.

Will she end up in a wheelchair?

What we do Reverse Rett works to speed treatments and a cure for Rett Syndrome and related MECP2 disorders by funding research that will have a practical and positive impact on our children’s lives.

We fund research from basic science to clinical trials and work to facilitate the translation of this work into clinical applications for people with Rett Syndrome and related MECP2 disorders.

Since the organization was launched in 2010, we’ve delivered over £3 million to the research via our partner organisation, the US based Rett Syndrome Research Trust. (www.reverserett.org)

Some girls with Rett Syndrome never walk. Some walk and lose their mobility at a later stage or slowly over time and a few keep walking throughout their lives.

Rett Syndrome is a disease that will progress slowly throughout your child’s life.

However, the speed at which Rett syndrome progresses in a given child and the severity of symptoms can vary.

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Below is a timeline of a few of the key developments in Rett Syndrome research. This shows the momentum in the research over the last 20 years:

So whilst Rett Syndrome may not be a well-known or common disease, research has progressed faster and more effectively than it has in many other more common diseases.

1999 2001 2007 2011

Mutations in the gene MECP2 are identified as the cause of Rett Syndrome.

At Reverse Rett, we work intensively to speed treatments and a cure for Rett Syndrome by aggressively funding international research and facilitating the translation of this work into clinical applications for people with Rett Syndrome in the UK.

Genetic mouse model is made.

Most of this work is funded through the amazing efforts of families who love someone with Rett Syndrome with support from their friends, communities and beyond.

2013

For the first time, researchers are able to reverse Rett symptoms in a mouse using Gene Therapy techniques which could be used in humans.

2015

Clinical trials of the first potential treatments for symptoms of Rett Syndrome begin to emerge with human trials of Copaxone, Lovastatin and Ketamine underway.

Rett Syndrome is shown to be hypothetically reversible in mouse model.

If you would like to take action to help speed treatment for Rett Syndrome, even if you are not sure how you can help, please get in touch at any time. We want to hear from you.

Rett Syndrome deemed ‘neurodevelopmental no longer’ as removing the ‘Rett protein’ from healthy adult mice is shown to cause symptoms.

Email enquiries@reverserett.org.uk Call us: 0161 434 8117 32

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“

It was truly heartbreaking when I received the diagnosis for my daughter. People said it must be easier now that we knew what we were facing, but they were wrong.

I grieved for the child we thought we would have, the conversations we would never have, the ‘I love yous’ we would never hear and the first steps that never came.

I soon accepted what her diagnosis meant for my future but I don’t think I will ever accept what it has done to hers. She deserves so much more. She has taught me to be more patient and caring and more considerate. She is a constant reminder of what really matters in life.

The parents I have met in person and online have given me a lot of support and advice, a willing ear to listen and occasionally a shoulder to cry on. The girls I have met have surprised me with their determination and ability and have given me hope for my daughter’s future.

I would be lying if I said that we didn’t also have many fears for her future. Rett Syndrome is scary and complex and until a breakthrough is made in reversing the condition in people, she will need constant care.

But I don’t feel heartbroken any more. I feel like there are real possibilities for a cure and until that day, I will make sure she is safe and loved and her voice is heard.

“

Catherine, mum to Eliza

Reverse Rett is a charity registered in England and Wales, charity number 1136809