Air Force Aide Society was there when we needed it

  • Published
  • By Jody Long
  • Air Force Spouse
Parenting a child with special needs has taken us on a most unexpected journey full of incredible difficulties and unprecedented joy. It's been almost five years since our son, Ryan, was born with a life threatening tumor in his heart. He was two days old when we learned he suffered from a genetic disease, tuberous sclerosis complex, which effects about 1 in every 6000 babies born. TSC causes tumors to grow in many different organs, primarily the brain, heart, kidneys, eyes, skin, and lungs. While the severity varies greatly from person to person, many suffer from difficult to control seizures, developmental delays, mental retardation, and autism.

We knew right away that Ryan had a severe case of TSC. He is one of just a handful of children who needed heart surgery to survive. When the seizures started at three months old, we were under the impression that they would go away with medication and life would go on as normal. We soon found out that isn't always the case.

A few days after the initial seizures began Ryan also started having a devastating type of seizures know as infantile spasms.

Our doctor recommended a course of treatment for Ryan that included a medication that was not covered by insurance and very expensive.

We were fortunate that the medication worked well for our son, but we had to increase his dose many times to repress breakthrough spasms. What started off costing about $360 a month now costs anywhere from $490 to $560. The initial plan was to wean him off after a few months of being seizure free, but somehow we have never reached that point. Despite multiple drugs, two major brain surgeries and a pace maker which stimulates his brain every three minutes, he still suffers anywhere from 10 to 25 seizures a day.

Our lives are very different than they were five years ago and we've learned quite a few things along the way. We don't worry about the little things as much as we used to. We've learned to live in the present and appreciate the small victories and we've also learned that sometimes it's okay to ask for or accept help.

Not too long ago, at a time when we were seeking second opinions out of state and had considerable medical expenses piling up, we applied for a grant through the Air Force Aide Society to help cover the expenses of a few months of medication for Ryan. We certainly never wanted to be in a position where we needed assistance, but were so grateful that they were able to help us through a difficult time.

Given all of Ryan's medical issues, we've grown accustomed to the fact that a crisis can happen when we least expect it. We always plan ahead as best we can, but sometimes the seizures seem to have their own agenda.

At Ryan's last epilepsy appointment, with his seizures spiraling out of control yet again, his doctor decided he needed to be admitted to the hospital for treatment right away. I instantly had that familiar sinking feeling in my stomach and my thoughts began to spin.

How were we going to make this work? We're used to inpatient stays, but this one was further complicated by a deployed husband, trying to arrange care for my other son and uncertainty as to how long we needed to put our lives on hold. Not to mention I was just worried about Ryan.

We decided the best way to get through this hospitalization was to have my mother fly up on short notice to help. As I began the flurry of phone calls necessary to make that happen, my husband placed a call from Iraq to the Airman and Family Readiness Center here on base.

Within hours, Fran Cusick and her crew had figured out a way to get my mother from the airport in Providence to Children's Hospital, and had called the Air Force Aide Society on our behalf and requested a grant to cover all of the travel expenses.

What a huge relief for us. With so many things to worry about, it was wonderful to receive help in such a tangible way.

It's so nice to know the Air Force Aide Society is there, not only for us, but those friends and coworkers who for whatever reason find themselves needing assistance. As this year's Air Force Assistance Fund campaign enters its final week, please take a moment to consider donating if you haven't already. I know we will. As we found out, you never know when the family you are helping might be your own.