Starlight Families Share

Audrey's Story

At the age of 12 my world was flipped upside down. Severe pain, vertigo, tremors, and muscle loss led to many hospitalizations and countless different diagnostic tests and specialists, all leading to no answers. After two and a half years the doctors had given up on me and wrote me off as a psych case.

When I was 14 my dad got a job opportunity on the other side of the country in Arizona. Little did I know what God had in store for me how many questions would soon be answered. Shortly after getting settled I had to be pulled out of the 8th grade due to uncontrollable pain. Once again the doctor hunt continued.

After a few months of searching, a chiropractor suggested we go to see a rheumatologist because I had “super human stretchable ligaments.” Within minutes of walking into his office he had a diagnosis, he said it was painfully obvious I had Ehlers-Danlos Syndrome. As he explained the condition, not only the past few years made sense but so did the small things that had been going on my whole life, including random bruises, “growing pains,” and shoulder and ankle problems that we learned later were dislocations.

I am now 17 and much has gone on in my life since then, including secondary diagnoses, problems that are still awaiting diagnosis, long hospital stays, a new journey of homeschooling, and finding Starlight. I first heard of Starlight Children’s Foundation Arizona from one of the child life specialists at the hospital. Starlight has been invaluable to me and my family. Having the opportunity to get out of the house and meet other families going through similar situations at the Great Escapes has weakened isolation’s grip on us.

Last year after looking on Starlight’s website I saw a link for Starbright World, Starlight’s online community for chronically ill teens. Having the opportunity to meet and become friends with teens who could relate to what I’m going through has truly changed my life. Before Starbright World I knew of no one my age who could understand what I was going through, but now I know inspiring teens from all over world and we all rally behind each other. No one acts awkward when they find out you are in the hospital or when they learn of the procedures you’ve been through, everyone is so supportive. We also know how to have a good time on there! I can always count on my friends there to cheer me up. I would recommend Starbright World to all chronically ill teens.

My family and I can’t thank Starlight Children’s Foundation enough for what they have done for us.

With love,

Starlight Teen Audrey and family

Alex's Story

David and Amanda have five beautiful children -- Todd who’s 14, Ryan 11, Hunter 8, Jason 6, and three-year old Alexander.  Needless to say, the children have always kept their parents busy with carpools, homework, after-school activities and the happy chaos that comes with a family of seven!

Their busy life came to a shocking halt last October when Alex was diagnosed with Dandy Walker Syndrome Variant, a congenital brain malformation. In an instant Alex’s diagnosis changed the lives of everyone in the Brown family. This is their story, as told by father David Brown.

Since shortly after birth, our youngest son Alex was an unusually cranky baby, and nothing we did seemed to soothe him.  My wife could never put him down, and he would only go to sleep if she rocked him. Then, when he was four months old, his head circumference began to grow much faster than the rest of his body and by nine months old it was off the charts.  Amanda and I had raised four other children, and we knew that something wasn’t right. But no matter how hard we pushed, Alex’s pediatricians didn’t see any cause for alarm. They told us to “keep an eye on it” and didn’t run any diagnostic tests.

All of that changed one morning when Alex fell from the living room sofa onto the carpet, and lapsed into a deep coma.  Paramedics rushed him to the hospital, and we all waited, terrified while doctors in the ER performed a variety of tests. After the longest, most excruciating hours of my life, they made their diagnosis: Alex had a congenital brain malformation called Dandy Walker Syndrome Variant. 

Alex was in the hospital for two months, during which time he had multiple surgeries, treatments and therapies. When he woke up after his first surgery, it was as if he was a newborn all over again.

Amanda was by his bedside 24 hours a day during those months, and focused on his care once he was able to return home. I struggled to keep up with my work as an Attorney with the Phoenix Public Defender’s Office and a facilitator for the University of Phoenix as the bills piled up. 

As if all of that weren’t enough, child protective services became suspicious that a simple fall from the sofa would cause a child to go into a coma and began to investigate my wife and me. For seven months, we dealt with a humiliating and devastating police investigation until our doctors were able to convince the authorities that Alex’s coma was caused by a congenital problem and not abuse. There we were ― trying to focus our entire existence on saving our child’s life ― and we were forced to deal with the injustice of such heart breaking accusations.

Amanda and I turned to our extended family and members of our church for help, especially when it came to making sure Todd, Ryan, Hunter and Jason were well cared for.  As a parent, it’s heartbreaking to feel like you aren’t giving your kids as much attention and time with mom and dad as they need. And even worse when you see homework and grades start to suffer and behavioral issues develop.  They missed us. It was a scary and uncertain time for everyone in our family.

Perhaps worst of all was that Todd, Hunter and Jason marked their birthdays during this ordeal, and we weren’t able to do much of anything to celebrate.  We couldn’t even have the kids’ friends over for birthday parties because of Alex’s demanding treatment schedule. Our world kept getting smaller.

One night while I relieved Amanda so she could have a break, I was walking the hospital corridors with Alex when I spotted a poster advertising an upcoming Starlight Great Escape.  The idea of an all-inclusive event that would allow our entire family to have some fun together and distract us from Alex’s treatments sounded like a dream come true.

Once Alex’s health began to improve, we attended our first Great Escapes.  Now we go whenever we can and all of our kids look forward to them.  We’ve enjoyed many neat excursions -- Zoolights at the Phoenix Zoo, Monsters on Ice and the Circus just to name a few. They bring our family closer, simply by allowing us to set aside time to be together and forget, just for a little while, the treatments, therapies, surgeries, MRI’s, CT scans and worry associated with Alex’s illness.  Without Starlight, there is no way we’d be able to afford or find the time to plan all of these wonderful family experiences.

We also have the chance to meet other families in similar situations – maybe not dealing with the same illness -- but struggling with the same sorts of issues - concerns about care and dealings with physicians.  Our children get to meet other siblings and develop friendships with similarly-situated kids who understand how they are feeling.

One Great Escape last summer in particular meant the world to us.  Held at a local pizza restaurant, the theme for the event was a birthday party celebration – an invitation for Starlight families to come together and celebrate all of the sick children’s birthdays that had been overlooked due to undergoing treatments. For our family, however, it was a chance to make up to our kids the birthdays that we’d missed.  You can’t even imagine how much that meant to us all.  Todd, Hunter and Jason got the best belated birthday party you can imagine.

I am very happy to say that Alex is doing much better today. We were able to have his feeding tube removed, and he’s now eating normal food and feeding himself. He’s also walking and talking a bit and expressing his preferences for favorite activities, foods and toys. He’s even figured out how to get past the child-proof latches on our cabinets!

Slowly, our family is returning to the life we had before the scariest, early days of Alex’s illness.

This wonderful organization has done so much for my family and me. Starlight has truly helped open our world up again.  I wish that every family with a sick child could have the same benefit, and perhaps with the continuing generosity Starlight donors, we can make sure that they do.