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Wheels and a lift for Emma Grace

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Hello, we are Chris and Dianna Ryan and we are raising money to buy a wheelchair van and to modify our home for our daughter, Emma Grace. Thank you for taking a few minutes to learn about Emma.


Just over four years ago, after an unremarkable and relatively easy pregnancy, our lives were turned upside down. Emma did not breathe spontaneously at birth and was intubated and rushed to the Lenox Hill NICU where she spent the first month of her life.


Emma was faced with so many developmental issues that the second month of her life was spent at St. Mary's Children's Hospital in Queens.


When we finally got Emma home, we were managing regular visits with nine different doctors while juggling PT, OT, and feeding therapy with Early Intervention and private therapists. This new normal, crazy as it was, had Emma showing marked improvements. We were encouraged.


At around five months old, Emma began having seizures. It is not easy to explain the world of seizures to the uninitiated. They are insidious. They rob developmentally delayed children of hard won victories. In Emma's case, her seizures were diagnosed as Infantile Spasms. They did not present themselves in a way that a layperson would recognize. This meant that Emma was having seizures for over a month without our realizing. Now, over three and a half years later, Emma has still not made up the ground that she lost to them. They have left her legally blind, she is fed primarily through a gastrostomy tube in her stomach, and her abilities are hovering in the range of a typical three month old. Emma cannot talk, sit up, crawl, or reach.


Seizures also change as a child grows, so Emma now battles myoclonic seizures. These require regular overnight hospital stays for video EEG's to make sure that Emma's eight different medications are keeping pace.




These regressions took their tolls on us. We both work full time, Chris as a firefighter and Dianna as a buyer, while sharing caregiving responsibilities. Chris had to pass up a promotion to lieutenant because Emma's life was so unstable. We were consulting with doctors in New York, Philadelphia, Los Angeles, and Germany while looking for ways to improve Emma's care and life.



Two years ago, this search led us to sell our home in Queens, New York to move to Westchester County so that Emma could attend Blythedale Children's Hospital. This brought all of Emma's therapies - speech, vision, feeding, PT, and OT - under one roof.  She is also seen by a doctor and multiple nurses each day. Just as important to us, Emma gets to be around other children, hear music, and experience things that she could never be exposed to at home. When Emma gets home on the bus each afternoon, it is usually with a big smile. We know that the expense and effort of moving north were worth it.



 Of course, we were also constantly wondering, "What is going on here?" and, "What made this happen to Emma?" After years of ever more complex genetic testing, Emma was found to have Ogden Syndrome. There is very little known about Ogden. It was thought to only affect boys and to be 100% fatal when it was "discovered" in 2011. This is obviously not the case anymore, as Emma is among only 22 known cases of Ogden in girls worldwide. There is also one little boy living with the syndrome. Each child has varying levels of developmental difficulties and only three have a seizure disorder along with Ogden. Unfortunately, Emma's mutation is specific to her and she is among the most severely challenged of the group.


Each day has its share of struggles and fears because a diagnosis like Emma's raises more questions than it answers. One welcome answer did come when we found out that Emma's gene mutation was spontaneous and not inherited. Emma is now a big sister to five month old Fiona Faith. 


This September, Sarah became the fifth member of our family. Sarah is a special needs au pair and physical therapist who has come from Germany to stay with us and help care for Emma. We do not know how we had survived without her.



The road to this point has been rocky and circuitous with many paths taken, doubled back on, abandoned, or retread. We bought a ranch style house hoping to only need to make minor modifications to a few doorways and to install some ramps and to avoid the need for an in home lift for Emma's wheelchair. We have since learned that our walkout basement has the best layout for Emma to have a bedroom that will accommodate her hospital type bed, a ceiling lift and track system for the day she becomes too big for us to safely pick her up, and the space for a roll in wheelchair shower. We also mistakenly believed that we could transport her in a car, but have come to accept that the safest way for Emma to travel is in a wheelchair van. We need to buy a van by the end of the year because Emma has just about outgrown her car seat.


The cost of these items is truly staggering and outside of the purview of insurance. We are asking for any help that you can offer to help us give our Emma a more comfortable, "normal" life.

UPDATE: We did get Emma a beautiful BraunAbility Toyota Sienna and it has made getting her to her army doctors in NYC so much easier. Since I was a little boy, I have always loved cars. This new ride, however, is my favorite and we owe it to the overwhelming generosity of friends, family, and strangers. Thank you all so very much!


So, we fell off the face of the earth for a time. We had a major health obstacle in our lives aside from Emma; Chris was diagnosed with throat cancer in May 0f 2018. It was a rough time, but the good folks at MSK have had me cancer free for two plus years now.  Here we are celebrating Emma's 7th birthday last month.


In July of 2019, we moved to a home that was in a more Emma friendly location for Emma - we have sidewalks, flat ground, and town in walking distance. The pandemic brought challenges to us as well as the rest of the world. We are unable to have a special needs au pair because of travel restrictions, so Emma's care is a bit more challenging. In the things are looking up section, we have now hired an architect and will be moving ahead with an expansion to give Emma a purpose built room that can satisfy her current and future needs. Watch this space for photos of the work!


Thank you so much! -C, D, E, & F
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Donations 

  • Chris Ara
    • $100 
    • 11 mos
  • Ryan Charkowick
    • $100 
    • 1 yr
  • william schillinger
    • $200 
    • 2 yrs
  • Anonymous
    • $100 
    • 2 yrs
  • Mikhail Graytser
    • $100 
    • 2 yrs
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Organizer

Chris Ryan
Organizer
Pleasantville, NY

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