11 minute read
A Mother's Love, Sister's Support
WHEN SUSAN PAGE DAILY (THETA Theta-St. Joseph’s) was initiated into Alpha Phi in 1998, she felt connected to the women in the chapter and knew she could be herself around them. Three years earlier, Marisa DiChiacchio (Theta Theta-St. Joseph’s) joined Alpha Phi and remembers the desire to build lasting friendships and mem ories together with her sisters. They bot h found what they were looking for in Alpha Phi, even if their paths did not connect often on campus.
Susan recalls thinking Marisa’s senior class was full of cool, wise women she looked up to, and, after graduation, both Marisa and Susan went on to enjoy life. They built careers and nurtured families. They enjoy reunions and con necting with college friends. They see e ac h other a few times a year. Their kids connect. Today, they take part in Zoom calls and make use of social media to stay in touch.
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When Susan and Marisa made a home in Alpha Phi, they never imagined one of them would have a son whose health would one day bond them together more deeply than before. by Gina Henke
Susan, a stay-at-home mom with a background in special education, say s, “Currently, many of us are in different stages with our kids or living in different parts of the country, so it’s harder to physically get together…. I am not the biggest fan of social med ia, but at a time like this, I thank God for Facebook. Right now, our sister really needs us and it’s a fast avenue to be able to keep in touch and now keep in close contact as we support our sister, Marisa.”
When Marisa, now a senior recruiting consultant at a staffing firm, had her eldest son, Connor, in 2008, she never dreamed she would find herself having a conversation with his doctor nearly eleven years later that would change their lives forever. On April 24, 2019, she and Connor’s dad, Mike Dobbyn, learned that Connor had a rare, genetic, terminal disease called Sanfilippo Syndrome.
“My h eart broke into a million little pieces because I learned that my first born was literally given a death sen tence with no cure,” said Marisa.
Tha t moment was the terrifying culmination of years of questions. When Connor was just under one year old, he presented with a speech delay and qualified for Early Intervention guidance. At three and a half years-old, his fine motor skills did not seem to be advancing as quickly as expected and so Connor was evaluated by a develop mental pediatrician.
G en etic testing was also performed, but initially showed no red flags. At that time, Connor was given a diagnosis of attention deficit hyperactivity disorder (ADHD), developmental delays and motor planning disorder. When symp toms were not improving one year l at er, Marisa and Mike sought a second opinion. They believed Connor was on the autism spectrum, and enrolled him
in social skills, speech, occupational and physical therapies.
In k indergarten, Marisa says, Connor’s teacher agreed that he definitely p r esented signs of being on the autism spectrum, so they took that information to his developmental pediatrician who finally gave an autism diagnosis. Then, in third grade, Connor’s school per formed a full psychological evaluation. Hi s IQ had plummeted 40 points and there was a cause for concern. It was recommended that Connor undergo another genetic test, and the results of that test pointed to Sanfilippo Syndrome.
“I magine Alzheimer’s, but in children. In a nutshell, that’s what every family of children with Sanfilippo Syndrome
SUSAN PAGE DAILY (THETA THETA-ST. JOSEPH’S)
faces. While every cell in the body is affected by Sanfilippo Syndrome, b r ain cells suffer the most,” said Marisa, who is now all too familiar with medical language.
S a nfilippo’s effects on the brain become apparent between two and six years of age when speech problems, de velopmental delays, challenging behaviors, extreme hyperactivity and poor s l eep present. The cause of this rare disease is metabolic. Connor’s body cannot properly break down chains of sugar molecules. When a certain en zyme is absent or not functioning well, th e sugars are not broken down and his body stores it inside cells instead of releasing it.
M a ny children are initially diagnosed with autism before finding the under lying diagnosis of Sanfilippo Syndrome. Ch ildren with Sanfilippo go on to experience progressive dementia similar to A lz heimer’s, stealing away their skills and knowledge. Sanfilippo Syndrome will often cause these children to suffer from seizures. They will lose the ability to eat for themselves and many will get a feeding tube. They will lose the ability to walk and need a wheelchair. Relent less and devastating, children with Sa nfilippo Syndrome often pass away in their teenage years and Connor t u rned 12 this June.
“Connor is a mother’s blessing. He doesn’t have a mean bone in his bo dy. He is happy, smiley and snuggly all of the time. Connor equals love. One hundred percent pure and innocent love. I can’t imagine my life without him….No parent should ever have to go through this. I hope that our story will help spread the word and raise the money that we need to save these children,” said Marisa.
When Susan read Marisa’s post on Facebook that shared Connor’s diagno sis, she felt compelled to act. “When I first heard the news, I was heartbroken for Marisa, Connor and their family. I h a d seen her beautiful boys grow up via Facebook and I just simply couldn’t bear the thought of what they are fac ing…it came down to me looking at my o w n family and how Marisa and I both live the ‘boy mom’ life with two sons… I also recognized that I have the time to he lp. I couldn’t sit still watching a sister who I’ve always admired as a mom go through this,” said Susan.
Li ke Susan, many Alpha Phi sisters were deeply touched by what they could only imagine Marisa and her family were going through. Friends and family have generated substantial awareness and donations to kick off a fundraising campaign to search for treatments.
U n like some more well-known devastating illnesses, Sanfilippo Syndrome has no cure and its research is n o t well-funded because only one in 70,000 babies is born with this inher ited disease. Moreover, there are no cl inical trials or treatments available for children who experience Sanfilippo Syndrome Type C, which is what Connor has. The types are determined by the particular enzyme affected.
“I r eached out to Marisa via Facebook and shortly after we met up with our boys at a pumpkin patch near her home to discuss some ideas and plans f o r Connor’s Warriors,” said Susan. She reached out to every sister she was connected with, making sure they k n ew of Connor’s diagnosis and asking for ideas of ways we could supper Marisa and her family.
Th e Theta Theta women formed a private Facebook group so they could organize plans of how they could help Marissa, Connor and the family. Fellow sister Stacy Dmytryk Wolfinger (Theta Theta-St. Joseph’s) offered to help create a website that would c o ordinate the fundraising efforts. “We then needed a name,” Susan recalls, “We wanted our name to reflect strength and courage, as this battle to beat Sanfilippo is going to require a lot of both, in support of Connor and his family. Lauren DiChiacchio (Theta Theta-St. Joseph’s), Marisa’s biological sister, and other Alpha Phis have made helping Marisa and her boys their mission. "We came up with ‘Connor’s Warriors.’”
S u san and the Theta Theta sisters didn’t have to think twice about coming together for Marisa. “We are all moms, aunts or siblings ourselves and could quite easily imagine ourselves in Marisa or Keenan’s (Connor’s younger broth -
er) shoes…so we stand with them and support them in any way we can,” said Susan. They have designed logos, made t-shirts, suggested fundraising efforts , b een there to pray, support and listen .
Community support of Connor’s Warriors has been key. The Theta Theta sisters have helped raise approximately $5,000 in these first few months, and that gift has been matched several times over because Connor’s story con tinues to be shared online, through the me dia and in the community. To date, the group has raised over $175,000. The number is impressive for such a ne w effort. Connor’s family aims to raise the necessary $5 million to fund a clinical trial that could improve or extend Connor’s life or the life of another child with Sanfilippo Syndrome.
D o ctors are not sure what Connor’s future looks like. Every child facing this disease is different. His medical team is monitoring his health so they can identify any regression going forward. Marisa says they strive to make each day count. Connor’s younger brother, Kennan, has been strong and brave, the way no young child should have to be, says Marisa. If he and Connor can do what they are doing, that is all the in spiration Marisa needs to put one foot i n f ront of the other to fight for clinical trials that could help Connor.
Keenan is aware of his brother’s struggles and his parents answered his questions about Connor’s health an d prognosis. As a result of Sanfilippo Syndrome, Connor has the cognitive skills of a four or five year old, and so he does not understand much of what Sanfilippo Syndrome is. In his mind, he is just like his brother and his peers.
The love Marisa has for her children pours out of her with each breath she takes. Her road is not easy; yet, Marisa is an ever-present advocate for her chil dren. “Being a mother is, honestly, my bi ggest success. I pride myself on being very involved, present and engaged with my boys, Connor and Keenan. We have an unbreakable bond and we call ourselves the ‘little trio,’” said Marisa. “I feel incredibly fortunate to have two boys who are so loving, kind, smart, friendly, easy going and always up for fun. I cannot imagine my life any differently than the exact way it is and appreciate both of them — and their very different personalities — so much. I always talk about how lucky I am, and I truly believe it.”
S u san relates, and said, “Being a mom is about nurturing them, loving them unconditionally, advocating for them, providing for an protecting them. You pick them up when they fall. You encourage them even when they think they can’t. You are your child’s biggest cheerleader.”
Beyond the Connor’s Warriors support, the Theta Theta sisters have been raising awareness for Connor’s story on social media, making direct donations, hosting social media birthday fundraisers for the Cure Sanfilippo Foundation, hosting lemonade stands and attending live fundraising events. They have also engaged a few small business spon sors in the cause.
Fo r Susan, this experience has reminded her of one of the best parts o f A lpha Phi. “Stretches of time may pass without being able to physically see each other, but we know that when we need our sisters they will be there,” said Susan.
“For me, I needed a lot of time to pro cess Connor’s new diagnosis and feel m e ntally and emotionally ready to go public with our news. I was afraid that people would feel sorry for me, when that’s the exact opposite of what I need ed,” said Marisa. “I needed emotional su pport and a smiling face. I have been overcome with emotion by the outpour ing of love, support, guidance and ideas fr om my sisters, friends and community. It’s almost been overwhelming t h e amount of fundraising ideas that people have come to me with, but that’s a testament of how much good there still is in this world.”
The choices we make in our lives have meaning that we often don’t realize un til some time has passed. When Susan a n d Marisa made a home in Alpha Phi, they never imagined one of them would have a son whose health would one day bond them together more deeply than before.
T h at is one of the beautiful things about sisterhood. We show up. We “Stretches of time may pass without being able to physically see each other, but we know that when we need our sisters they will be there.”
SUSAN PAGE DAILY (THETA THETA-ST. JOSEPH’S)
care. We don’t know how it all plays out, but we are there for one another. Life’s moments — especially the hard ones — are a little lighter when we have others to help us carry them. Alpha Phi is not an experience that only lives on college campuses. It is not a series of meetings. It can’t be reduced to a collection of photographs or videos. It is a sisterhood built on the shoulders of women — from 1872 through today — with arms linked, holding one another up and reminding each other we are in this together.
For those sisters who want to learn more about Connor’s journey, please visit connorswarriors.com and fightforconnor.com.
