Lilly Sophia Stokes was born March 7th, 2009 – she was a big baby weighing in at 10 lb 3 oz. My pregnancy was completely normal and we had no indication that there was anything abnormal about Lilly until she was born. I delivered Lilly via c-section and when she was born I remember the nurse telling me there was something wrong with her ear and she had a cleft pallet. Lilly was transferred to Henry Ford Main hospital in Detroit, MI where many different specialists tried to figure out what was wrong.
Once I finally recovered and got a chance to be with Lilly at the main hospital, that’s where all the testing and procedures began. She has several different genetic test done, but nothing ever came from it. Little did we know at the time that her genetic syndrome had not been discovered yet. At the age of one month old Lilly had a mandibular distraction to help her breath and eat better. She was very lucky that she did not had to get a tracheostomy tube, as most kids with her syndrome do. We worked day and night with the nurses in the NICU to get her to eat from a special bottle. After two months she was able to go home, but she had to go home with a NG feeding tube in. We were shuffled from one doctor to another and I finally made the decision to transfer her to Children’s Hospital of Detroit. It was there I met Dr. Rozzell, the cranial facial doctor. Things were starting to look up, Lilly got a hearing aid, she had her cleft pallet fixed at 8 months and was receiving many types of therapy. Again we had genetic testing done, but nothing was discovered.
One night when Lilly was 2 years old she had come home from daycare and seemed to be not feeling well, she would not eat and ended up getting sick. After I gave her a bath I put her to bed, not long after I went to bed myself. Something woke me up in the middle of the night and I ran in to check on Lilly and found her lifeless and blue. I lived with my parents at the time, so I called for my mom to help. We had no idea at the time she had a seizure. She was transported to the hospital where she had another seizure. From that point forward she was put on medications for seizures and she had many procedures and tests to figure out why she was having them. They made a decision that they were febrile seizures and that she would out grow them. When Lilly was 3 she had a status epilepticus seizure, luckily we were at the hospital, but they worked on her for over 1 hour as she coded right in front of our eyes. She ended up in a chemically induced coma for over a week. I think due to that incident I will never be the same, but I knew that Lilly’s life was not going to be anywhere close to normal.
I made the decision to transfer her to University of Michigan Mott Children’s Hospital where she currently is seeing 11+ specialists. It was here in 2015, Dr. Hannibal of genetics ran a new genetic test and we finally discovered that Lilly has Mandibular Facial Dysostosis with Microcephaly. Currently, there are approximately 200 people in world with this syndrome that are documented. This syndrome was discovered in 2012. Finally, we had some answers and to read the description, it fit her like a glove. Thankfully, this syndrome is not progressive to a point that it is fatal, unless there is a serious seizure. MFDM is a mutation of EFUDT2 gene, this syndrome is often mistaken for Treacher Collins Syndrome, but is definitely not. Some of the symptoms of MFDM that Lilly has are seizures, fused thumbs and big toes, small jaw, missing ear on the right sight, cleft pallet, hearing loss, and many others. Not all children with MFDM have the same symptoms, the majority of the children do not have seizures like Lilly, but many of them have g-tubes and traches, which Lilly does not have.
We are hoping to obtain a service dog for Lilly from 4 Paws for Ability for many reasons. A service dog could help us and Lilly with her seizures, hearing impairment, and her emotional and social behaviors. Lilly is a happy, fun loving, and very smart little girl, unfortunately this syndrome comes with cognitive, social, and emotional issues that she has to deal with. As Lilly has been getting older, she is noticing that she is different and so are other kids her age. She is trying hard to engage with other children, but often we find her playing alone, because other kids have a hard time understanding her. On average, Lilly has at least 2-3 doctors’ appointments a month, at least 1 surgery a year, and at minimum 2 procedures a year. Lilly has unfortunately developed a fear of the hospital and a lot times the doctors, because of everything she has been through. With a service dog, I am hoping they can bring her comfort during those times in additional to the medical benefits offered by both seizure assistance and hearing assistance skills. I believe that this dog will not only help Lilly medically, but give her a best friend. I have been told that Lilly will always need help and I would love to see her obtain a service dog to start her on the way to being more outgoing and help alert us when something is happening.
It costs at least $46,000 to specially train a dog for Lilly. Families cover only a portion of that cost, a fee of $17,000. We are fundraising to help cover the fee required to provide her with a life-changing service dog. Donations in support of Lilly should be made directly to 4 Paws for Ability – be sure to write Lilly Stokes on the memo line. Mail checks to:
4 Paws for Ability
In Honor of Lilly Stokes
253 Dayton Ave.
Xenia, Ohio, 45385.
If you wish to make an online donation, the website is www.4pawsforability.org/donate-now. Include Lilly’s name in the “instructions to merchant” through PayPal. You may also call to make a credit card donation over the phone at (937) 374-0385 – Monday thru Friday 9AM to 4PM EST.
Thank you for your support!