Matthew H.

Matthew became a big brother!

September 21, 2015

Matthew was able to get a genetic test done called Whole Exome Sequencing. His doctors weren’t sure what they would find, but the results came back and they found a mutation on the UBE3A gene - responsible for the rare Angelman Syndrome. However, Matthew’s symptoms aren’t consistent with Angelman. Doctors have continued testing on Matthew to try and discover the correlaion between Matthew’s symptoms and Angelman. Unfortunately, although this information brings comfort - it brings no new treatment plans.

Matthew has spent the last couple months bonding with his beautiful new baby brother Mason Phillip who was born June 22nd, 2015. The whole family is overjoyed.

When dad Kevin got a new job last summer, the family was thrilled that it came with excellent health benefits. Then, the prescription benefit program changed 2 months later, and no longer covered Matthew's medications. The family has been battling with the insurance company to get Matthew's medications (which cost over $2,000 a month) covered because he has a rare disease and the medications help him significantly.

Lastly, Matthew started Kindergarten (for the second time) but now with full days and he's loving it! Matthew is really responding to structure and routine. He has a wonderful team of aides, teachers, and therapists that help him grow and learn at his own pace. This Fall Matthew is scheduled for a sleep study and a spinal tap, but he's a trooper! 

His family thanks "all of you for your prayers and support over the last year and a half since this page was started. We still love hearing about and seeing photos of "Matthew's Minions." Many blessings to each and every one of you!" KCCO, Matthew!