Emma's Story is shared by her mom, Courtney Boggs.
Our daughter Emma Grace is 9 years old and was diagnosed with SURF1 Leigh Syndrome at 21 months old. We first noticed something was wrong when she was 6 months old when we tried to introduce baby foods and she refused to eat and would only nurse. She received a feeding tube at 18 months of age. At 3 years old she lost the ability to walk and at 4 years she went into respiratory failure and we decided to proceed with a trach.
When we first received her diagnosis at 21 months of age, we were devastated and in complete shock and disbelief. Words cannot describe the heartache we felt. My husband and I went back to the hotel room and held each other and sobbed.
Despite the obstacles she faces she is always smiling and full of joy. She is very determined and never gives up. She doesn’t let anything stand in her way even her physical limitations. Being with her family and playing with her sister brings her the most joy. Seeing her smile and the love she has for life gives us strength. Also our faith in God gives us hope, peace, comfort and strength that surpasses understanding. A memory that our family holds close is when we went to Disney World for her Make-A-Wish trip. A amazing milestone we will always cherish was when Emma began getting stronger after getting her trach and started to eat when previously she would never eat.
The advice that I would offer to newly diagnosed families would include to never give up hope. God is bigger than this and He’s bigger than anything we will face in this life. Live in the moment everyday and cherish each precious moment. Everyday holds the possibility for a miracle.
