Welcome to Evaâ€™s Miracle
What is Spinal Muscular Atrophy (SMA)? SMA affects 1 in 6,000 to 10,000 infants. Spinal Muscular Atrophy is a genetic disorder that affects the control of muscle movement. It is caused by a loss of specialized nerve cells, called motor neurons, in the spinal cord (the brainstem).
There are many types of SMA distinguished by the pattern of features, severity of muscle weakness and age when muscle problems begin. Eva unfortunately has the most severe case, Type 1.
The loss of motor neurons leads to weakness and wasting (atrophy) of muscles used for activities such as crawling, walking, sitting up, and controlling head movement. The muscles used for breathing and swallowing are always affected in children with Type 1.
Eva loves to go out and do â€œnormalâ€? things. It involves a lot of work and help, but it is rewarding and fun for all of us.
Eva is just like us in her mind yet she needs us to give her the ability to move her body and you are part of this gift to her
What helps an SMA (Spinal Muscular Atrophy) Type 1 child have hope for a longer life? None of the following â€œmeans of careâ€? removes the word terminal from her diagnosis. Her disease is genetic and until a gene therapy cure is discovered OR
God heals her (or both), Eva will
succumb to her condition. In the meantime, we live. Live everyday with abundance, hope, passion and LOVE.
Three areas we focus on are: 1. Nutrition 2. Good respiratory support 3. Keeping her healthy
Obviously the financial burdens of caring for our little warrior with SMA type 1 is significant and can be overwhelming. But it is our job to support her and help her to grow as any other 3 year old child would. Thanks to your support and love, you are a part of the gift of life to Eva.
Most people (ourselves included) have no concept of the financial burden of caring for a medically fragile child. Especially one as weak and frail as Eva.
Some of you have inquired as to what it takes to have the best care for Eva. The following pages will show you the many ways your contributions to her medical fund have blessed us.
Eva Grace turned 3 in January. THEY SAID “she would not make it to her 2rd birthday”
I would like to share with you how your donations have helped Eva Grace
How you have supported Eva in staying well • Diapers, baby wipes, cloth masks, vinyl gloves, disinfecting wipes and spray. • Extra toilet paper and hand soap for nurses and guests. • All of this adds up and at times can add an extra $100 a month to our basic grocery budget
Electricity, heating and cooling costs have increased significantly to help regulate Eva’s body temperature, she cannot do this on her own. To run all of Eva’s equipment our electric bill has increased more than $300 a month. Her machines run 24/7.
Here are some of the past fundraisers for Eva
Zumba Fundraiser in Monroe September 2011
Evaâ€™s Benefit Dinner October 2011 Over 500 people attended
Orange Ale House Evaâ€™s posse working for the cause!
Numerous Bake Sales
St. Lawrence School Walkathon
The following are some of the ways your donations have helped us so far Thanks to your support and love, you are a port of the gift of life to Eva
â€˘ Major house renovation to accommodate Eva and all her equipment â€˘ Addition of handicapped bathroom and therapy spa tub
• Widen doorways for medical equipment • Upgrade the entire electrical system to support Eva’s equipment
Portable Generator Donated to insure Evaâ€™s equipment will run at all times
The handicap ramp paid for by private donations and installed by Habitat for Humanity
Initial down payment for Evaâ€™s handicapped van. Future donations go towards bulk payments on the van.
Angel Arm that gives her more independent mobility Invented by another SMA mom. This is Evaâ€™s friend Ella modeling the Angel Arm. Eva is currently learning how to use it.
She was even given a trip to Disney by a wonderful foundation called Baking Memories 4 Kids! And boy did we make memories!
We always have a need We are always trying to raise money for Evaâ€™s ever changing needs. She is getting older and will require different methods of communication and mobility to increase her independence.
Tobii Eye Gaze This computer will allow Eva to choose words or pictures by “gazing” her eyes on a picture choice for a half a second. With this computer Eva can “tell” us what she wants and what she needs. This device can be her voice and give her the opportunity to live a richer, more connected and independent life.
Head Pod This device allows Eva to hold her head up and will give her the freedom she doesnâ€™t have now. It will allow her to nod and turn her head side to side. We are currently trialing this unit.
Digital WiFi Monitor System This allows us to monitor Eva with cameras to view her machines and numbers while she sleeps. This will also enable mom and dad to be away from the house and still be able to see her on the iPhone.
Thank you for loving us. Thank you for caring enough to share your time and resources with us as we continue this journey of living with SMA. John, Melissa, Noah and Eva Grace Kelly
Thank you for your countless prayers
Donations • If you would like to donate please go to evasmiracle.com or mail to: The Kelly Family 156 Central Avenue West Haven, CT 06516 • To get updates on Eva, please follow her on face book under Eva’s Miracle. • For more information on SMA go to: www.fsma.com
Thank you for your generosity • Is it not sharing your food with the hungry, and sheltering the homeless poor; if you see someone lacking clothes, to clothe him, and not to turn away from your own kin? • Then your light will blaze out like the dawn and your wound be quickly healed over. Saving justice will go ahead of you and God’s glory come behind you. • Then you will cry for help and God will answer; you will call and he will say, 'I am here.' If you do away with the yoke, the clenched fist and malicious words, • if you deprive yourself for the hungry and satisfy the needs of the afflicted, your light will rise in the darkness, and your darkest hour will be like noon.
Eva is a courageous 3 year old little girl living with Spinal Muscular Atrophy (SMA) Type 1. Learn more about Eva Grace and how you can help...