Our Story
Our family’s exceptional needs story began in 2004, when our first child was born.
Noah Louis Siler was born on October 15, and little did we know how we would forever be changed.
Noah was born in distress and rushed away by several nurses. He was tested, poked, and prodded in hopes of diagnosing his condition, but to no avail. It was decided to transfer him to a larger hospital with an NICU and more specialists.
Testing continued at the NICU. Seeing our defenseless, week-old baby covered in tubes, wires, IVs and facing a mystery condition was unbearable and so hard to understand.
During Noah’s stay, we traveled the hour each way every day to spend time with him and wait for an update from the doctors. Ed was unable to go to work because we were needed at the hospital, but the bills were piling up. The stress was constantly bearing down on us.
Finally, we received the diagnosis: Zellweger Syndrome, which is a fatal genetic disorder. It was at this point that the team of doctors told us they had done all they could do to try to save Noah’s life, but we were at the end of any possible treatment. Arrangements were made to have him brought home on a feeding tube and monitors, in the care of his family and hospice.
Our son came home with his terrified parents – not greeted by balloons and smiles, but by hospice nurses with sad eyes and sympathetic smiles. This was not the homecoming parents envision.
For the next few weeks, our days and nights consisted of spending every moment holding Noah and talking to him. We became experts at his feeding tubes, his medications, and hospice medical lingo.
The dreaded day had come to leave Noah with Grandma and meet with the funeral home. Our hearts ached to see such a tiny casket. We felt as though we were giving up on our sweet baby!
From the day Noah came home until the day God called him home on December 1, 2004, he was held 24 hours a day by us and our family. We never wanted him to be alone.
During those six grueling weeks, we felt so much love and support from not only our family, but strangers as well. The generosity that people showed was so appreciated and unexpected. Those helping hands in our time of need have never been forgotten, and touched my heart so much that I have felt compelled to do the same for other families experiencing trying times. We know firsthand how people’s willingness to give in your time of need can help take that financial stress off your mind.
After the death of Noah, we decided to use donor sperm for our next pregnancy because doctors told us there would be a 1 in 4 chance of a child having Zellweger Syndrome via standard conception. We felt we had made a smart, educated decision, even though it was an emotional journey to do so.
When we found out it worked and we were expecting twins, we were so thankful and finally felt we could be the family we dreamed of! But within weeks of finding out I was pregnant, the problem started.
I was in the ER more than I was at home. The doctor prescribed medicine to help with nausea and recommended a lot of rest to hopefully stop my pregnancy-related bleeding.
Unfortunately, the medicine was close to $900 per month and was totally unrealistic for us. We felt trapped but needed it, so we were forced to buy $50 worth at a time.
I was trying not to stress about the ER bills and the cost of my medication, and instead stay calm and healthy for the babies.
On September 16, 2006, at 17 weeks, I delivered a stillborn baby boy alone in my bathroom. He was perfect and looked like he was peacefully sleeping. The next few minutes were a blur, but what seemed like a minute later I was being loaded into an ambulance and on the way to the hospital.
The doctors checked on the second baby. He was still alive, but losing blood and fluid. They said it was only a matter of time before I would lose him too, and 12 painful hours later, they were right.
Being 26 years old and having three sweet baby boys in Heaven was more than I could handle! It was an unbelievable heartache!
But our story does not end there. Ed and I went on to have two more healthy children: Maggie and Brady, who helped heal our broken hearts.
When Brady was 18 months old, he was diagnosed with autism and global developmental delay. Our exceptional needs journey started again. Brady is now 11 years old and has brought us so much joy!
Insurance only covers a portion of what is needed to raise a child with exceptional needs. It doesn’t cover travel, food, hotels, special dietary needs, and necessary therapies.
In the course of researching specialists in autism, we discovered a doctor with amazing results in Los Angeles. We knew we had to meet him and see if he could help Brady. It was a very expensive endeavor, and we sold personal possessions to make the trip possible.
We started the doctor’s protocol and were having some success, but the monthly costs were too much to manage. We were forced to make an incredibly difficult decision and withdraw from the program.
We have gone through 11 years of research, treatments, blood tests, and therapies – as well as thousands of dollars and countless hours driving to and from doctors – all in the hopes of finding a “magic treatment.” Our journey will be lifelong and we will never give up.
We live the life of a family with exceptional needs and understand the financial burdens that come along with it. Ultimately, we are blessed to have an amazing support system, but we realize that is not everyone’s reality.
No one should face these situations alone, and it is the mission of MCO to fill that void.
– Jennifer Siler
