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Riley's Medical Fund

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Riley's little brother, Harrison, also has INAD. Confirmed Sept 1st.
Harrison is currently developing normally. Starting to talk, trying to walk. He just turned 1 on July 17th. When RIley was diagnosed, we had him tested immediately, hoping that the 75% chance that he would not have INAD would be enough. It wasn't. Our sweet, smart, rowdy little boy will soon regress, like his sister, and I don't know how much more our family can take. So thank you all for your support and donations. They are going to help our family so very much.

Riley is a beautiful, happy, very loved little 2 year old. She will be 3 on Halloween. She loves Mickey Mouse Clubhouse, traveling and eating anything and everything. She has a mean streak and laughs when people trip or drop things. She loves to be sung and read to. She loves her older sister, Natalie, and her younger brother, Harrison. She has big, beautiful blue eyes that everyone always comments on.
She was born and progressed normally. But once she turned 1, she started to regress. She never walked, she stopped talking, she stopped doing things that she was once able to do. She was once able to crawl around very quickly, navigate stairs and feed herself with a fork, but now, 2 months shy of her 3rd birthday, Riley can't even sit up. She has to be propped up between 2 pillows because she will fall to the side, and she has to be in a chair or seat because she will fall backwards. She has to have her sippy cup propped up on a pillow in front of her because she is too weak to hold it herself. She wears braces on her ankles to help with her sever supination, but it is very unlikely that she will ever walk. She has cerebellar atrophy, which means she has difficulty with balance and speech. She’s hypotonic, which means she’s very floppy and has very poor control of her muscles. But what Riley has, is very rare. Only around 40 people in the world have it, and only ½ of those live in the United States. 

Riley has Infantile neuroaxonal dystrophy (INAD). A rare inherited neurological disorder. It affects axons, the part of a nerve cell that carries messages from the brain to other parts of the body, and causes progressive loss of vision, muscular control, and mental skills. INAD is the result of an abnormal build-up of toxic substances in nerves that communicate with muscles, skin, and the conjunctive tissue around the eyes.  Symptoms usually begin within the first 2 years of life, with the loss of head control and the ability to sit, crawl, or walk, accompanied by deterioration in vision and speech. INAD is an autosomal recessive disorder, which means that both parents must be carriers of the defective gene that causes INAD to pass it on to their child.
There is no cure for INAD and no treatment that can stop the progress of the disease.  Treatment is symptomatic and supportive.  Doctors can prescribe medications for pain relief and sedation.  Physiotherapists and other physical therapists can teach parents and caregivers how to position and seat their child, and to exercise arms and legs to maintain comfort. 
INAD is a progressive disease.  Once symptoms begin, they will worsen over time.  Generally, a baby’s development starts to slow down between the ages of 6 months to 3 years.  The first symptoms may be slowing of motor and mental development, followed by loss or regression of previously acquired skills.  Rapid, wobbly eye movements and squints may be the first symptoms, followed by floppiness in the body and legs (more than in the arms). For the first few years, a baby with INAD will be alert and responsive, despite being increasingly physically impaired.  Eventually, because of deterioration in vision, speech, and mental skills, the child will lose touch with its surroundings.   Death usually occurs between the ages of 5 to 10 years.

Despite having these physical issues, the insurance has denied her a specialized wheelchair and physical therapy. I am asking for help because it is scary how quickly Riley’s disease is progressing. Just a few months ago she was able to sit up and crawl. She needs physical therapy and she needs a wheelchair to help with her posture (the way she sits unassisted now is causing spinal issues).


At this point, she is still able to communicate with us through mother’s intuition (sometimes, I just “know” what she needs), smiling for "yes“ (I’ll ask her yes or no questions and she will usually smile for the option she would like), and an app on my iPad that has pictures to chose from. We are going to fight this as much as we can. But we need help. We are trying to save up enough money to buy her wheelchair, modify the van to transport her wheelchair, pay for physical therapy and, if there is any left, take the family on a vacation to Disney World so she can meet Mickey Mouse, her absolute favorite. Her older sister is 11 and knows what is happening, and I would like to make special memories for all 3 of my children so that they don’t just remember Riley sitting on the couch or laying in the floor all day.
We are also concerned for our son, Harrison, who just turned 1 in July. He has been tested for INAD (because my husband and I are apparently both carriers) and we will know if he is normal in a few weeks.

We have already been humbled by the amount of support and love we have received from friends and family. We have even had a few ask to send us money. Which is why we decided to start a gofundme account.

It’s embarrassing to need help financially. But most of you who know our family know that Jason is currently working so I can finish my degree and stay home with our children. Thank God I stayed home, or I wouldn’t know everything Riley is trying to tell me. I wouldn’t know when she’s hungry or tired just by her cry. But once I finish my bachelors, I will be able to go to work and support my family. But until then, we are asking for help. My beautiful daughter needs your help. Anything you can do will be greatly appreciated.
Thank you so much for reading this.

If you’d like to learnmore about Riley and her jouney, please check out her blog.


Whitney Frost
Hopkinsville, KY

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