Kayla's Story: Parent's Letter Project Neurofibromatosis type 1 with gliomas and neuromas - Kayla's parents

Our daughter came into our care from the foster care system. She came to us at the age of 3 and was diagnosed by the end of the year with an optic glioma. She started chemotherapy and went through one full course of a Vincristine/Carboplatine regime. This was a scary time in our lives and not knowing anything about this disease was probably the toughest thing. She ended up having a sac coming down from the optic glimoa that was pressing on her brain stem in a life-threatening way.

Our doctors in New York suggested a second opinion and it just happened that we ended up at Children's National. What a blessing this was. Our neurosurgeon in New York said that our daughter was going to die - he didn't know when, but said he couldn't do anything. When we got our second opinion at Children's National that was not the case. Within a week, our daughter had brain surgery and her life was saved.

It is now almost five years since that surgery. If we had not come to Children's National for a second opinion, our daughter might not be alive today. Coming to Children's National was a miracle from God and we are just so blessed by the doctors and staff.

We have found that Children's National has the best knowledge of neurofibromatosis type 1 (NF1) and is always trying to find a cure for this terrible disease. Dr. Roger Packer is the head of almost all of the studies done to find a cure for this terrible disease and we couldn't be more blessed by having him as our doctor. Even today, with our daughter's fourth round of chemo, we know that this is the place we have to be to help our daughter live a good life. We travel 6 ½ hours every 2 weeks to get the best medical attention for her. There are many doctors who don't know much about  NF1 and what protocols are out there, but let me advise you that Children's National is a leader in finding a cure for this terrible disease.

Please be an advocate for your child and ask all the questions you need to get the answers you need. This is a life-long battle and only you know your child best and only you can help him or her through this. With Children's expert medical staff, you'll know you are doing everything you can for your child.

This is a rocky road to travel and can certainly turn your world upside down, but with God and the constant studies being done in this field, one day there will be a cure - I am confident of this. Know that you are not the only parents going through this and making the toughest decisions of your life - you are not alone. Seek the best care for your child. We believe that Children's National is that place.

Sincerely,

Kayla’s parents, James and Randi

Treatment Team

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