My daughter, Holli, simply did not develop.
Doctors hesitated to raise an eyebrow at my trembling baby until she was two years old and still not talking, walking or playing.
Eventually, we were medevaced from Germany (where we lived at the time) to Johns Hopkins Hospital in Baltimore, where my family spent an entire summer watching Holli undergo medical testing. Finally, we learned she had mitochondrial disease.
Holli’s diagnosis completely changed us—she became the sole focus in our lives. Suddenly, everything revolved around her medication schedule, therapy schedule, hospitalizations, etc., and it continues to this day.
Socially, we’ve been affected by Holli’s illness. We immediately stopped hearing from many of our “friends” after her diagnosis; some people are just unable to bring themselves around sick children, even if they are not contagious. At home, Holli’s illness had a huge impact on her two older brothers who grew up always hearing, “Oh, no, we can’t do that because of Holli.” We were never the family that could head to the water park on a warm day. Instead, we plan our visits to places based on whether there is wheelchair access.
Emotionally, the hardest thing for me to do is explain to Holli that she cannot participate in something. She wants to be just like other kids — running and jumping to her heart’s content — but doesn’t understand that she is limited by her health condition and cognitive disabilities (she functions on a 3-to-5-year-old level). One day, on top of the heartbreak that came from watching my daughter receive a g-tube, I had to explain to her that her new condition meant she was no longer eligible to attend camp. Poor Holli could only translate my explanation as rejection—she assumed her old friends simply did not like her anymore.
Fortunately, our lives headed in a different direction when we learned about Starlight at a disability convention. Starlight has had a huge impact on my family’s life. Starlight’s Great Escapes family events — or as Holli calls them, ‘Starlight Parties’ — are the only times my family is able to get out of the house and be around others who have similar issues. No one stares. Everyone has fun and feels like part of the crowd.
Holli’s condition brings expensive therapy and medication costs, so our money is tight. However, through Starlight’s help, the impossible is made possible, and we are able to take part in fun activities — the circus, the ballet, the zoo…the list goes on and on. Great Escapes bring my family wonderful experiences that allow us to be worry free and feel normal.
And it’s very evident just how much Starlight means to Holli.
Several years ago, Holli began riding therapy at the HART Center just outside Temple, TX. Holli thrived — her muscles got stronger, her gait became less wobbly and her enthusiasm for the horses was untouched. The owner of the HART Center was so taken by Holli that he decided to “give” her a horse so she could come to the Center whenever she wanted. Holli absolutely loved Fury and regularly gave Glenda Skinner, Starlight’s Great Escapes Coordinator in Austin, full reports.
Unfortunately, last summer, Fury became very ill and passed away while Holli was at camp. She was devastated and cried and cried. The next day we had a Great Escape so I called Glenda to let her know about Fury and to ask that she wait for Holli to bring up the horse. Glenda was so kind with Holli when she finally told the story. Shortly after, we received some great news — the owner of the HART Center had another horse for Holli! We were all so happy.
The horse’s original name was Poco. However, the very second Holli sat on the horse, she said “This Starlight.”
The horse has been named Starlight ever since.