Lena's Smiling PHACE
Why do we walk? We walk for Lena. We walk to say Thank You. We walk to raise money for research and development. We walk, until every child is well!
Lena turns 10 this year and has been treated at Boston Children's Hospital since she was just 2 months old. She was diagnosed with the rare occuring PHACE Syndrome. She experienced hemangiomas in her trachea, which were at one point blocking her airway by 90%. So, she was breathing with only 10% of her airway clear...this is when she now talks about her Darth Vader breathing! The amazing Dr. Rahabr was able to resect the hemangioma and reconstruct her trachea with a piece of cartiladge from her ribcage. After that, she was "in hibrenation" for close to 2 weeks as her throat healed. Lena also has a unique pattern of veins and arteries in her brain, which lead her to 8 or more angiorams and embolizations in her brain. The amazing Dr. Orbach has been a blessing to us and has helped her get to where she is today.
Where is Lena today? Probably in her room playing Legos, at dance, playing piano, hanging with her family, painiting or crafting, attemting to cook in the kitchen, or doing mostly anything a normal 10 year old girl might be doing! This is mostly due to those at Boston Children's Hospital. While Lena knows she is not medically "normal", but certainly unique, that doesn't stop her from anything! Lena is still followed by a team of doctors and now only has to visit here and there instead of what seemed to be multiple trips a month/year. So, we walk in hopes that future children receive the same great treatment that Lena has!
We thank you for all your past and future support of Team Lena's SMiling PHACE!