Meet Larsen Grace Purvis
Sasha had three families, her biological family, her Sickkids family and her Alagille family. Through a random genetic hiccup, Sasha is as much Mia and Eve's sister as she is the sister of Larsen Grace Purvis of Tenessee who was born in August 2007. I am so happy to read Larsen just enjoyed a road trip down to New Orleans to meet more of her family. Larsen, like Sasha, has Alagille Syndrome and pulmonary atresia and her care journal is already full of medical interventions and the heart breaking rollercoaster of big dips and rebounds. Our open hearts and most positive wishes extend down to Larsen and her mom and dad Tamara and Frank, their family and friends and the team at Vanderbilt Children's Hospital who are helping Larsen. They are about to go to Children's Hospital of Philadelphia for a second opinion. I was saddened to see that catheterizations, like with Sasha, have so far not induced blood vessel growth: "For most of the weekend, we were suspended from reality. Earlier that week, we had taken Larsen to the cardiologist for an echocardiogram to see if her vessels had grown since the cath she had back in January. Dr. Parra reported that there were no changes. His demeanor was neutral and our reaction was about the same. Usually, I cry when we visit the doctor but that day I was numb. He indicated that probably over the summer they will attempt another cath and maybe stent placement. He doesn't talk about the future anymore and neither do we." Reading this brings back the memories of our clinic visits and hopes for stents and dredging of Sasha's tiny collateral arteries. Only yesterday Pamela and I were remembering our Sasha time as one of living day by day. I am so happy Larsen went on a holiday and wish her many more road trips to come.