Larsen Grace Purvis

In April 2008 I shared a link to Larsen Grace from Tennessee who was like Sasha's Alagile sister in their rare combination of liver and heart defect. I hoped Larsen would live long and defy the odds and each email notification of a new carepage was a special delivery. Her mother Tamara posted on her Carepage details of a life full of love and hope and challenge and travel and family and all kinds of supports. Almost every carepage ended with prayers for children they knew with Alagille syndrome. Her posts on the Alagile Syndrome Alliance bulletin board shared ups and downs and reached out with thoughts and support.

Larsen grew into a beautiful, golden skinned girl who loved her little sister Courtlyn. She rebounded from numerous proceedures but at age 2 she broke a leg and more recently she fell from her bed one night and needed surgery to stem a bleed in her brain. After a catheterization, Larsen's family prayed daily that the tiny collateral arteries to her lungs would expand. As we are learning, the collateral arteries in these children do not grow. At three and a half years of age, Larsen's care team declined further intervention and so did another team. On Dec 31 a carepage update celebrated that a specialist in Cincinnati would stent and balloon some arteries on January 25.

My son Bram was born January 21 and the days flew by. On January 25, Tamara posted that Larsen was in surgery. I know how the moments pass for families during surgery, and this was high risk. A few hours later the update was "Larsen has passed." My heart raced and I felt dizzy.

A few days later Tamara shared what had happened, starting with a quick run through of her life and then the wonderful day pre-surgery at the hotel pool and out on the town. When Tamara told Larsen that morning that the doctor was going to try fix her heart, she said "Ok, that sounds like a good idea." Amazing - at one and a half years and then a diminished 2 years we could never have a conversation like that with Sasha. The surgeon saw a tiny tear but wasn't too worried and then she hemoraged and had a cardiac arrest. The team worked for some time to revive her and the surgeon was shocked and emotional. The family's faith is strong and Larsen is with her God.

Larsen you touched and live on in many hearts and you chose a great family to love and care for you and to love in return. Like Sasha, you were more fragile than we realized. May your memory be a blessing to your family who gave you so much love. My heart goes out to the Purvis and Gremillion families who packed so much life into Larsen's three and a half years.

You can read about Larsen's life at her carepage. You can learn more about research and family supports at the Alagille Syndrome Alliance and their bulletin board which has become the primary virtual support for families of children living with Alagile Syndrome.

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