Ronald McDonald House Becomes a Home

“John David, ‘JD’ as we call him, was a typical child and loved life. At the age of five, he had a bike accident. He was racing his brother and sister outside in the yard and he flipped off his bike and fell. We found him laying still on the ground and not breathing. From this point forward things seemed a little off. He started telling us his head hurt and was experiencing signs of headaches. Upon further exploration, the doctors told us it could be allergies and basically not to worry. Over time, his pain increased which led us to Maine to consult with a neurologist.

I think they thought we were crazy parents as we advocated and questioned in order to get JD the best answers and treatment. JD was put through many medical tests and given a spinal tap. The pressure within his brain was very high and very concerning. As parents, our worries increased with every test andevery step.

JD was sent to a neurosurgeon in Boston who wanted to give him experimental medicine. Another neurosurgeon we saw in Philadelphia was unsure as to next steps. JD endured tests upon tests from a spinal tap to a vascular system exploration. Ultimately, at the tender age of five, he had surgery to place a shunt in his head to manage the pressure within it. The experimental drugs didn’t work and gave him heart issues and additional problems. It was seeing JD struggle at such a young age and become increasingly more traumatized by every appointment and test, that made us decide to back away from all medication.

At seven years old, JD was suffering from dizzy spells and frequent falls, all because of what was happening within his brain. He fell down the stairs and basically did a cartwheel using his head. This fall resulted in a damaged brain shunt, and another surgery was needed to replace it. Unfortunately, the wrong size shunt was used during the repair surgery which resulted in a third surgery to correct the shunt size. During this surgery, JD, now eight years old, suffered a stroke.

We travelled throughout New England to get medical help and support for JD. He was found to have Shprintzen-Goldberg syndrome, a rare genetic disorder that affects several parts of a person’s body. It affects a person’s joints, their connective tissue, internal organs, and skin. They are hyper-mobile, so their joints are a little loose and not stable. There are about 40-50 people in the world thought to have the condition. JD also has polycystic kidney disease and Tourette’s syndrome.

Being away from home, doctor’s appointments, invasive medical procedures, hospitalizations, surgeries, or even staying in other overnight housing locations triggers JD’s PTSD each and every time. It is hard to watch your child struggle and we do our very best to help him. We will do anything for him.

Coming to Ronald McDonald House and staying many times over the last few years, getting to know staff and staff really getting to know us, has shifted something with JD’s PTSD. The signs of his PTSD just don’t show up. This is huge! He shares that he feels seen as a person and everyone is kind and happy.

Before coming to RMH, he would instantly want to leave our accommodations, asking how many days before he could go home and counting down the days until he could return to the safety of our home. Now we hear JD say, ‘Do we have to leave? When can we go back? Can’t we stay longer?’

JD is in for a lifetime of medical care as his conditions shift. As his parents, we are setting him up to be successful, independent, and healthy. Being here at the House, he is happy, comfortable and can be himself. The staff see him and are attentive to who he is and positively interact with him in a positive way. They care. They support. They offer compassion. This provides reassurance that people are good and kind, and the days ahead are going to be okay.

Currently, we are waiting for a surgery date. Surgery this time will allow JD’s hips, knees and ankles to be realigned and improve his physical mobility that is affected by his other challenges. This would not have been possible in years past with JD’s PTSD. Thank you for turning the Ronald McDonald House into a bright, comfortable, fun, and safe home. We will be back, so for now we will say, see you soon.”

-The Therrien Family