Abigail Starley: Help Us Help Her
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Three years ago our daughter Abigail was diagnosed with Celiac's Disease. A few months later she started throwing up anything she ate.
We took her to Joe DiMaggio's Children's Hospital in Hollywood, Florida. It is there where we realized this would be a long journey. A geneticist, Dr Ramos, has us tested for Ehlers Danlos Syndrome. This is a genetic mutation to a gene that affects the way your body makes collagen. It affects your muscles as well. The team a Joe D's were wonderful. They rehabbed Abby and we went home.
However this kept happening, the throwing up and we basically had no choice but to put in a feeding tube. We now have aged out of Joe D's and were at memorial Regional Hospital. They put in feeding tube. And that worked for awhile but at this point she couldn't even drink water so she kept getting dehydrated. I drove her across state to Tampa John Hopkin's Children's hospital. They were great. They has to replace tube again and rehab her. We were there for 6 weeks. But two week later tube came out. Then one month later tube came out. After seeking help at numerous hospitals everyone kept saying get to Cleveland Clinic. So our first Go fund Me page allowed us to but a deposit at Cleveland in Ohio, however Dr. Klein, the head gastro dr won't see Abby until she has the smart pill test. That's out patient. They could do in hospital but refuse. She's never out longer enough to get these tests done. We were referred to Dr. Snyder at Cleveland clinic in Weston, but she also won't treat Abigail while in hospital.
We have also taken her to Acupuncture, functional medicine Dr, Integrative Dr. These Dr's have discovered that Abigail's Atlas or C1 bone in her neck is so far out of place. She was in a go cart accident and apparently was almost internally decapitated. Only surgery by a neurosurgeon can correct this misplacement. They feel this is pressing on her nerve...your stomach is controlled by the vulva nerve... and all her issues are actually a neurology issue. However we can't get the medical Dr's to even consider this.
Where are we now? Three years in. A perfectly healthy child is now 97 pounds, on TPN through her veins to keep her alive, currently in ICU at West Boca Medical Center.
This month alone she was at West Memorial, they refuse to put anymore feeding tubes in, put her on TPN and then transferred her to a nursing home. She was there for two weeks and they begged us to take her to Cleveland Clinic through the ER. We gave it a shot. They kept her in the ER for 3 days refusing to admit her. Finally they discharged her, took her off her feed and IV and carried her to the waiting area by the front door. WHO DOES THAT? We took her home and with in an hour her joints froze up and she couldn't move. We had to call 911 and West Boca immediately admitted her.
Please help to save Abigail. She is only 19 and so very sweet and kind. She hasn't even been able to graduate high school because she's always too ill. She was a fantastic artist and a great student. She's an awesome Christian who totally has faith and hope that God has a plan.
She needs to be in an academic hospital like John Hopkins or Mayo or Cleveland in Ohio. We need an admitting Dr. They need a team to correctly diagnose her. We have actually had three Drs. tell us they don't think she has gastroparesis and that she can be fixed so we don't even really know what's wrong with her. We need help if she needs to be medi-vaced, we need connections, ideas, anything. Someone out there can help, whether it is with money, or connections, or with prayer, media exposure, making Abigail go viral so some Dr. will see and help us. This is urgent as she's in ICU at only 97 pounds. Please do what you can.
Be part of Team Abby....Be part of the cure...We need you!
Thank you
We took her to Joe DiMaggio's Children's Hospital in Hollywood, Florida. It is there where we realized this would be a long journey. A geneticist, Dr Ramos, has us tested for Ehlers Danlos Syndrome. This is a genetic mutation to a gene that affects the way your body makes collagen. It affects your muscles as well. The team a Joe D's were wonderful. They rehabbed Abby and we went home.
However this kept happening, the throwing up and we basically had no choice but to put in a feeding tube. We now have aged out of Joe D's and were at memorial Regional Hospital. They put in feeding tube. And that worked for awhile but at this point she couldn't even drink water so she kept getting dehydrated. I drove her across state to Tampa John Hopkin's Children's hospital. They were great. They has to replace tube again and rehab her. We were there for 6 weeks. But two week later tube came out. Then one month later tube came out. After seeking help at numerous hospitals everyone kept saying get to Cleveland Clinic. So our first Go fund Me page allowed us to but a deposit at Cleveland in Ohio, however Dr. Klein, the head gastro dr won't see Abby until she has the smart pill test. That's out patient. They could do in hospital but refuse. She's never out longer enough to get these tests done. We were referred to Dr. Snyder at Cleveland clinic in Weston, but she also won't treat Abigail while in hospital.
We have also taken her to Acupuncture, functional medicine Dr, Integrative Dr. These Dr's have discovered that Abigail's Atlas or C1 bone in her neck is so far out of place. She was in a go cart accident and apparently was almost internally decapitated. Only surgery by a neurosurgeon can correct this misplacement. They feel this is pressing on her nerve...your stomach is controlled by the vulva nerve... and all her issues are actually a neurology issue. However we can't get the medical Dr's to even consider this.
Where are we now? Three years in. A perfectly healthy child is now 97 pounds, on TPN through her veins to keep her alive, currently in ICU at West Boca Medical Center.
This month alone she was at West Memorial, they refuse to put anymore feeding tubes in, put her on TPN and then transferred her to a nursing home. She was there for two weeks and they begged us to take her to Cleveland Clinic through the ER. We gave it a shot. They kept her in the ER for 3 days refusing to admit her. Finally they discharged her, took her off her feed and IV and carried her to the waiting area by the front door. WHO DOES THAT? We took her home and with in an hour her joints froze up and she couldn't move. We had to call 911 and West Boca immediately admitted her.
Please help to save Abigail. She is only 19 and so very sweet and kind. She hasn't even been able to graduate high school because she's always too ill. She was a fantastic artist and a great student. She's an awesome Christian who totally has faith and hope that God has a plan.
She needs to be in an academic hospital like John Hopkins or Mayo or Cleveland in Ohio. We need an admitting Dr. They need a team to correctly diagnose her. We have actually had three Drs. tell us they don't think she has gastroparesis and that she can be fixed so we don't even really know what's wrong with her. We need help if she needs to be medi-vaced, we need connections, ideas, anything. Someone out there can help, whether it is with money, or connections, or with prayer, media exposure, making Abigail go viral so some Dr. will see and help us. This is urgent as she's in ICU at only 97 pounds. Please do what you can.
Be part of Team Abby....Be part of the cure...We need you!
Thank you
Organizer
Heather Starley
Organizer
Boca Raton, FL