Lilla's Tracheomalacia Treatment
My daughter's best friend is Lilla. Lilla is the strongest girl I have ever met. Lilla has been sick her whole life and was recently diagnosed with a rare condition called Tracheomalacia.
Lilla has the opportunity to go to Boston Children's Hospital to see the top doctor in the field and see if she is eligable for a series of surgeries (starting with a Tracheopexy) that would allow her to breath more normally. Here is a link to the information on the procedures:
http://www.childrenshospital.org/conditions-and-treatments/conditions/tracheomalacia/treatments
While insurance will cover some of these expenses I ask for your generosity in helping covering the costs that insurance will not cover. Lilla has 2 other siblings (an older sister (16) and a younger brother(6)). Her brother also has a milder case of Tracheomalacia. While Lilla and her mom will be traveling over the next few weeks to Boston, her family will be away from them for the first time in their lives. They will miss Lilla's 8th birthday. They will miss celebrating the holidays together. Hospital housing is full so they will have to make arrangements for housing until insurance can reimburse them.
I would hope we can at least raise enough money to fly the family out so they can be together during part of the holiday and so that Lilla isn't lonely during the holiday time in the hospital while she is tested, operated on, and recovering.
Since Lilla can't risk catching the flu or a cold before her surgery she can't go to school or see friends right now. My daughter and her are video chatting and texting every day. I love hearing them scream and laugh at the normal things 7 year olds think are hilarious, until the moment when Lilla starts coughing or is too exhausted to continue and hangs up. She always calls back a little bit later, and my daughter now sees this behavior as normal. But it breaks my heart.
I hope with everything I am that this surgery is successful. I hope that this go fund me can help ease the family's stress during this time. That it helps give Lilla and her family the gift of not waking up in the middle of the night to a child who is blue and can't breath. That they have a little less stress on their journey. One less thing to worry about.
Thank you,
Nicole
You can read about what it is like from Lilla's dad's post in October:
https://goo.gl/zb39Gy
Lilla receiving one of her vest treatments. She has to have these several times a day to break up the phlegm in her lungs so her body can clear her lungs.
https://www.youtube.com/watch?v=x-0zLa09cpY&feature=youtu.be
