Shane Hearts Boston
This page is set up to help my nephew, brother and sister-in-law. Please read the following from Sharon Bogan who is the Location Director - BrightStart Pediatrics in Sanford Florida where Shane attends during the week.
BrightStart Pediatrics is a PPEC center (Prescribed Pediatric Extended Care) "“ a nursing and therapy center for medically fragile infants and children up to five years of age.
This is Shane! I want to tell you about his family and their current struggles and I hope that you are as inspired as I. I work at a Prescribed Pediatric Extended Care center for medically fragile children. Shane is a 4-year old boy with Down Syndrome that attends our center. Shane was born 1/16/2009 with Down Syndrome and a few holes in his heart. He was also diagnosed shortly after his 1st birthday with Pulmonary Hypertension and has been on oxygen ever since. The doctors here in Orlando are not able to operate on his heart due to the Pulmonary Hypertension and the complexities that presents. Thankfully, the family was able to find a doctor in Boston that specializes in cases like Shane's and has agreed to see him and evaluate his case. Shane's care and accommodations will be paid for by insurance but his parents expenses are not.
Unfortunately, the day after receiving the wonderful news that Shane was accepted in Boston, the family received devastating news about his father Leon. Leon had to go to the hospital due to dizziness and other symptoms. The doctors found a tumor in his head and originally thought it was benign. The biopsy results unfortunately revealed a devastating diagnosis; Leon has Anaplastic Astocytoma, BRAIN CANCER. Leon will be starting a 2-year chemo therapy regiment along with radiation. He is 28years old!
Due to his health issues, Leon has not been able to work in some time and Shane's mother Candace has been working hard trying to take care of her two men. Candace works for a pool company and during the off season, has a hard time getting the hours she needs to make ends meet. Despite all of this adversity, Candace remains strong and stead fast in caring for the loves of her life.This family doesn't have much in the way of monetary things but what they do have is abundant love. Leon and Candace have loved and cared for Shane from the moment he came into their lives. What they can't provide in "˜things', they more than make up for with LOVE.
During the midst of all of the excitement for Shane and devastation from Leon's diagnosis, Candace also found out she is pregnant! They are very excited about the new addition to the family. Their excitement about the new baby and Shane's surgery are unfortunately dampened by the daunting years ahead for Leon and his treatment. Candace is the type of person that doesn't like to ask for help but this family is in dire need of help and prayers right now. "
I also wanted to update some of you that may not already know.
We are still waiting on Shane to go to Boston. We originally thought that Shane's visit to Boston was going to be taken care of but was actually not. Medicade did not approve the procedure. Shane's parents have since appealed this decision and we are waiting for the appeal to be accepted. The money that has been raised has been in a savings account and still available to Shane and his parents when the appeals process goes through. Myself and the rest of Shane's family are working has hard as we can. We have sent out many letters to different organizations and even our goverernment officials to try to speed up the process.
Again thank you so much for your support, prayers, and words of encougagement.
Shane hearts you all!!
Over $8K in donations from online (gofundme.com/Shaneheartsboston) to the events that we did to help get Shane to Boston.
It is a great feeling that so many of you have such big hearts. We love you all!! Thank you all a millions times over :)
Day full if friends and family in the park
Gemini Springs in Debary
12pm - 5pm
$5: 2 hot dogs chips and a drink of your choice.
We have face painting, games, and more.
If you haven't already written on Shane's poster board you will have an opportunity to do so at the picnic. Once it is full then we will have it hung up in Shane's room :)
Raffle winners will be picked by Shane himself for those who have participated in that. Tickets are still on sale.
$5 for one ticket or $10 for three tickets.
Prizes: 16gb mini iPad, 1 night stay at LaPlaya Resort in Daytona Beach, Gift card to LaSpada's subs, and an assortment of family board games.
GOD Bless all who donated to help my great-grand son, Shane and his family.
I will be reposting this so if someone missed it. This is our great nephew, and love to see him smile all the time. He is just an amazing kid. Thanks for all the prayers
We are keeping you, Shane and your Daddy and your Mommy in our thoughts and prayers. I keep posting so that as many people as possible will see that sweet little face of yours and when they do, it will melt their heart. Have a happy, fun birthday party tomorrow. Love you little guy!
Thank you everyone!!!
I love this little angel!!! This is such a wonderful family, please help them get to Boston so they can get this done for Shane. My thoughts and prayer are with you all!
Love my little dude!