Adalynn's Fundraiser for Shriners
Donation protected
Our daughter Adalynn was born on May 14th, 2014. Adalynn was born with an extermely rare syndrome called Encephalocraniocutaneous Lipomatosis or "Haberland's Syndrome". This syndrome has caused her to develop benign "fatty tumors" in her spine, which has delayed her gross motor development. Because of her condition Adalynn has begun needing special medical care and assitive devices to help her as she grows. As part of her therapy, Adalynn was enrolled in the "Early Steps" early intervention program through the state of Florida. One of her therapists recommended Shriners Childrens Hospital in Tampa to us as a resource for some of her medical needs.
For those of you unfamiliar with Shriners Childrens Hospital, they are a network of hospitals that provide care to children and their families regardless of their ability to pay. They specialize in the areas of orthopaedics, burns, spinal cord injuries, and cleft lip/palate.
My wife and I are fortunate enough that we have jobs that afford us access to excellent and reasonable healthcare for Adalynn. However, the assitive devices that Adalynn needed for her development - namely braces for her spine and legs - were providing an unexpected financial burden. We made an appointment at the Shriners Childrens Hospital in Tampa, Florida so that she could be evaluated. The hospital in Tampa was a beautiful, kid friendly facility that provided wonderful care. The staff was attentive and friendly to everyone there. Adalynn was evaluated by an orthopaedic specialist and orthotist, and was eventually fitted for AFO (Ankle-Foot Orthotic) braces. She received her braces and is doing great with them.
For all this wonderful care, Shriners never asked us for a dime. They do this for countless children and families across the country who are in more precarious positions than we are. It is a wonderful organization that operates primarily off of an endowment and donations (they have started to bill insurance companies but still provide treatment regardless of whether or not the services are approved or paid for by the insurance companies).
We wanted to do something to give back to the wonderful people at Shriners who provided our daughter with such wonderful care without any expectation of financial reimbursement. We would like to raise money in Adalynn's name to donate to the Shriners so that they can continue to provide the wonderful care to children who are suffering from various conditions.
We want to thank in advance everyone who can manage to make a donation. If you can't make a donation we just ask that you pass this GoFundMe page along on your Facebook page so that it can reach as many people as possible. Thank you all and God bless.
For those of you unfamiliar with Shriners Childrens Hospital, they are a network of hospitals that provide care to children and their families regardless of their ability to pay. They specialize in the areas of orthopaedics, burns, spinal cord injuries, and cleft lip/palate.
My wife and I are fortunate enough that we have jobs that afford us access to excellent and reasonable healthcare for Adalynn. However, the assitive devices that Adalynn needed for her development - namely braces for her spine and legs - were providing an unexpected financial burden. We made an appointment at the Shriners Childrens Hospital in Tampa, Florida so that she could be evaluated. The hospital in Tampa was a beautiful, kid friendly facility that provided wonderful care. The staff was attentive and friendly to everyone there. Adalynn was evaluated by an orthopaedic specialist and orthotist, and was eventually fitted for AFO (Ankle-Foot Orthotic) braces. She received her braces and is doing great with them.
For all this wonderful care, Shriners never asked us for a dime. They do this for countless children and families across the country who are in more precarious positions than we are. It is a wonderful organization that operates primarily off of an endowment and donations (they have started to bill insurance companies but still provide treatment regardless of whether or not the services are approved or paid for by the insurance companies).
We wanted to do something to give back to the wonderful people at Shriners who provided our daughter with such wonderful care without any expectation of financial reimbursement. We would like to raise money in Adalynn's name to donate to the Shriners so that they can continue to provide the wonderful care to children who are suffering from various conditions.
We want to thank in advance everyone who can manage to make a donation. If you can't make a donation we just ask that you pass this GoFundMe page along on your Facebook page so that it can reach as many people as possible. Thank you all and God bless.
Organizer
Paul Mazurkewitz
Organizer
Sebring, FL