Team Claire

I met Sally, Claire’s mom, through a Northern VA’s mom group. She is kind. She is brave. She is selfless. She loves her kids. She has a beautiful family, which includes her husband, Jeff, her little boy, Archie, and of course her perfect little baby, Claire. ***Here are her words... Our beautiful daughter Claire came into the world this year on the 14th of April. She surprised us by arriving one month early. She has a big brother, Archie, who is an energetic 2 and a half year old. At 5 weeks early, Claire was diagnosed with central apnea. Her diagnosis was not too significant, but it prompted her to have an MRI at 6 weeks old. That MRI was completely normal, and that finding plays a big part in Claires new diagnosis. During Claires struggles with apnea, her father, Jeff, got a new job in McLean, Virginia. We were excited to move, but upset to be saying good bye to Charlotte, our home. Claire was not meeting her milestones. She was such a sweet, quiet baby. Her smile lights up the room. But she was not sitting up, or lifting her head. We thought maybe she was delayed, from the apnea, or from being premature. Last month, Claire was rushed to the ER with what was thought to be a febrile seizure. We know now that the ‘seizure’ was actually quite the opposite. It was her body reacting to the fact that her brain is, essentially, shrinking. I will call them ‘episodes’. On the 9th of December, Claire was admitted to the children’s ward at Inova hospital, Louden, virginia. She was admitted for RSV. But, she was having the ‘episodes’ (her eyes would roll into her head, she would lip smack, and she would jerk her right side) She was transferred to the ICU in Inova in Fairfax. These episodes continued, and an MRI was ordered. On the 17th of December, 2019 (just a few days after Claire turned 8 months) my husband and I were called to a conference room. Claire’s Doctor was there, along with her neurologist and the genetics team. It was in that room that we were told the heartbreaking news that our sweet, wonderful, spirited girl had brain damage. It was not minor damage, Claires frontal lobe had significantly deteriorated. She has minimal white matter in her brain. The news of brain damage was difficult enough, but then we were delivered the crushing news that, by comparison of her first MRI, this was progressive. And it was rapid. Her brain will continue to degrade, until she passes. Due to the speed of the deterioration, Claire will pass within the next year. There is no treatment, there is no cure. It was no one’s fault. It could be genetic, or it could be bad luck. We discovered that Claire is most likely blind. She no longer eats by mouth and will be fed by tube for the remaining months she has. Our amazing, darling girl is going to die. And there is nothing that we can do to stop that. I am her mother, and I want to run away with her. I want to pretend she the doctors are wrong, that she is fine. But they aren’t, and she isn’t. I do not have the words to express how my husband and I feel. All I can say is that we are broken. We are deeply and utterly broken. The next few months we will be making sure Claire is comfortable, and adored. She will never know hate, or anger. She will never go cold, or hungry. She will only know love. Our sweet baby. I have dreams for you that will never come true, but I have love for you that will never fade. We love you, beautiful girl. You were just too special for this world. We will meet again one day. ***Every cent of the money raised will go toward Claire’s care and eventual funeral. Any unused funds will be donated to INOVA Fairfax.***