GAMT Deficiency

“New Rules for our School” – Randi

We are very fortunate in our state to have scholarships for children who qualify for an IEP but don’t attend public schools. This helps with funds for a visiting Intervention Specialist (special ed teacher) as well as home-based therapies. Sonnet’s health crisis has resolved greatly since she was diagnosed and began treatment for GAMT. However, her neurologist and I vividly remember when she was dealing with fifty-plus seizures a day. It isn’t certain if a serious illness could cause another downward spiral, so our family has chosen to largely quarantine during flu season. This was extended and amplified during the pandemic. Continue reading

“Success Using Teletherapy” – Randi

Most of the country has been on hold for a few months due to the COVID-19 virus. Even now, with the country reopening, our family is only going to required doctor appointments. Continue reading

“Pilates” – Beth

When it became clear that I would be caring for my son into his adult life, I knew that I had to make sure my body and mind would be ready for that. I knew I had to be as strong and durable as possible. Continue reading

“GAMT Newborn Screening Video” – Heidi

I recently had the privilege of sharing my family’s GAMT story with a group of professionals from ARUP Laboratories. Continue reading

The Paradox of an Aging Special Needs Child” – Beth

Standing in front of my kitchen sink in the cold, blue, January dawn, I run the warm water to wipe off my son’s face before he heads off to high school. The washcloth steams visibly in the frigid morning air as I carefully wipe off Benny’s face, getting off any traces of breakfast or sleepy eyes. He turns 15 in a week. I realize that I have to reach up to wipe off his face. He’s now taller than I am. I’m struck by the poignancy of this moment. Continue reading

“Enriching Her Life With Therapies” – Randi

Since Sonnet wasn’t diagnosed with GAMT until she was seven-years-old, she is severely affected developmentally in every way. We found that with treatment and therapies she gained new skills quickly. Her therapists are a VERY important part of our team. Continue reading

“Summer!” – Laura

Summer is the most coveted time of the year around our house… AND IT’S HERE!!! Both boys have birthdays in the summer, the weather is perfect for swimming and being outside all day, shaved ice and late nights playing – it is just great! Continue reading

“Traveling with Special Needs” – Randi

Everyday life with special needs children can be challenging. But one adjusts to the “new normal” and establishes a routine that works at home. When you add traveling to the mix it is a whole ‘nother mix of complications. My daughter thrives on routines, yet plane trips and overnight medical stays are just part of her reality (and mine!) How do we cope with these trips thrown in every few months? Here are several of the things that have helped us to have a more positive outcome. Continue reading

“A Surprise Diagnosis” – Randi

Sonnet was six and a half years old when we adopted her in the summer of 2016. She weighed only thirty pounds and was deemed profoundly malnourished by our doctor. We had watched from afar as her condition deteriorated over a period of two years from a child who could stand holding onto an object to one who could barely sit up. Continue reading

“New Year, New Boy?!” – Laura

Hey everyone! I hope the new year is off to a great start!

Levi has been in first grade this year, and absolutely LOVES school!  I am so glad for that, although I always wonder and worry how he is doing academically, socially, and behaviorally.  He has an amazing teacher that has not let him slip between the cracks and has been in touch with me A LOT about his lack of focus in school. UGH!!  Continue reading