“Patient Champion” – Amy A couple of weeks ago, we participated in something special – our Ben was a Patient Champion at the Nationwide Children’s Hospital Columbus Marathon and Half […]
“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. […]
#SeasonofSmiles – Whitnie As we approach the holiday season, it is customary to reflect and give thanks for the blessings we have. It’s also the season of giving and a […]
“What Are the Odds?” – Laura GAMT is really, really, rare. We all know that! I am sure quite a few of us have been told to buy a lottery […]
“What About Me?” – Kelly I’ve made no secret that our family life is somewhat different from the norm. Our home life is different as we live with 2 of […]
“Saying ‘I Love You’” – Beth It wasn’t until this school year, Benny’s 7th grade year, that we realized he didn’t have the phrase “I love you” on his communication […]
“Why Us?!” – Laura Sometimes it feels like everything just piles up – from the challenges of being diagnosed, seizures, hospital stays, to the complications we encounter every day.
“An update – 4 months on from the GAMT deficiency bombshell” – Kelly If someone told me at the beginning of last November, just how much our lives were going […]
“1% Chance” – Laura GAMT is so rare, just getting diagnosed seems to be quite an ordeal. I like hearing everyone else’s journey, and having this connection. Here is our […]
“Why Getting a Diagnosis Is So Much More Than a Label” – Kelly My daughter Holly (9) & son Isaac (4) have recently been diagnosed with Guanidinoacetate Methyltransferase Deficiency (GAMT). […]