Lily's Butterfly Wings
Donation protected
Our 6 year old daughter Lily has been diagnosed with a rare disease Turner Syndrome. This affects 1 in every 2,000 girls. Turner Syndrome girls are born with only one X chromosome or a partial X. Most are born without ovaries or streaked ovaries. Therefore, Lily will have to be given hormones to induce puberty and promote female development when the time is appropriate. Lily will not be able to carry a child of her own. As a part of Turner Syndrome the girls have short stature and need daily growth hormone injections to help reach their maximum height. Turner Syndrome also may affect their kidneys, eyes, ears and heart as well as some other physical and developmental issues.
Upon her diagnosis, Lily endured numerous testing by the above mentioned specialists and it was determined she has a congenital heart defect, a hole in her eardrum and strabismus which all need surgery to repair. She is scheduled to have open heart surgery on March 18th at CHOP. During that time she with be in ICU for a week or more and only one parent is permitted to stay with her at night. The other will need to find housing nearby. I will be out of work on FMLA for an undetermined length of time to take care of her during her recovery.
Lily has a long road ahead of her as this is a lifelong battle. She will have the other two surgeries at some point in the future.
Lily is a brave, beautiful young girl with an amazingly positive attitude. She has said many times" God made me this way and it's OK. He makes everyone different".
We as a family are reaching out to family and friends for assistance with expenses we will occur during this pressing time. Help is needed as I will be out of work on an unpaid leave. We are asking for any donations to help with housing, gas and food expenses during her surgery and our bills like rent, food, gas and insurance, etc. during her recovery while I'm out on leave.
We would greatly appreciate your generosity during this trying time.
With warm thanks,
The Bailey Family
Fundraising team (2)
Mandy Lee
Organizer
Raised $475 from 8 donations
Bath, PA
Brian Bailey
Team member
Raised $175 from 3 donations
This team raised $3,085 from 39 other donations.
