Airline Tickets or Private Jet Needed
- The Stapps have a fight booked to CA now.
Our little friend Callie Stapp needs to get from Atlanta to Stanford in CA as soon as possible. Callie was born with the same underlying diagnosis(22q11.2 micro deletion) as my son Caden. Below is what Callie’s mom wrote explaining the situation. The bottom line is that they need to get from Atlanta to California ASAP. Anyone with the cash or an excess of frequent flyer miles who can reserve them airline tickets would be great. The flyer miles can be used without donating the miles and costing you a ton of cash in fees.**
When I was five months pregnant they detected a heart defect in Callie during a standard ultrasound. At first thinking she had Down’s syndrome, they did an amniocentesis and found that she had a small deletion in chromosome 22, a condition some call DiGeorge syndrome. This syndrome can cause up to 180 different defects which include congenital heart defects, facial and other body deformities, kidney problems, seizures, thyroid and parathyroid issues, small or missing thymus etc….
We weren’t sure what was going to happen when Callie was born.
Although we knew she had a significant heart defect, they were limited to what they could see while in-utero.
When Callie was born, they discovered she had Pulmonary Atresia, with a VSD and she was collateral dependant (PA VSD MAPCAs). This means Callie essentially does not have a pulmonary artery. It’s there but it’s just a useless flap of tissue. What her little body did was create these tiny “collateral” vessels that bring oxygen to her lungs. Albeit, not a lot of oxygen but enough to get her by. However, in many cases, these vessels atrophy and die away with time and the child gets less and less oxygen and eventually die. Callie also has an enormous hole in her heart (VSD). This is a mixed blessing as it alleviates the pressure that this defect causes but it also causes the oxygen-rich and oxygen-poor blood to mix. Because of this, Callie’s saturation levels remain low. While a healthy person usually sats around 95-100, Callie’s are 77-84.
Dr. Hanley at Stanford was the only person that would touch her. He has created a procedure called a unifocalization where he consolidates all those collateral vessels, puts them in a shunt and rebuilds the pulmonary artery with cadaver tissue. Once the collaterals show they are big enough to handle the pressure, Hanley closes that VSD and that’s when the child feels a heck of a lot better and sats are normal. Callie’s defect is very very far on the difficult end of the bell curve when it comes how complicated it can be. This procedure is usually done in one surgery. Callie’s first surgery was just a consolidation of her vessels on her right lung. It was a 14 hour surgery. Her second visit was a consolidation of her left lung, that had just two vessels one mm wide each providing oxygen to it.
To make problems worse, Callie has no visible thymus, however, they did make note of some T-cells. Last count, she had about half of what she was supposed to. This is why it is such a miracle that she has successfully fought every cold, virus and infection thrown her way. Callie also had low calcium at birth, which, if not supplemented, will cause seizures. That too, has reversed itself, and she is showing signs of not needing calcium at all. We are continuing to wean her off calcium and she is mantaining normal levels. Callie is very intelligent and hitting all her intellectual milestones.
Dr. Hanley wants to see Callie ASAP for a cathaterization which will show the status of her collateral vessels. If there is some stenting or ballooning that needs to be done, it can be done via cath at Stanford. Once Hanley sees Callie’s cath, he will also assess whether she needs her surgery right then and now or if she can be sent back home to return in March. In the meantime, Callie has had to contend with some horrific battles with her GI system.
Hope this helps clarify some things. Please don’t hesitate to contact me if you need additional info.
Thanks for praying for us and with us through all of this.
Love,
KarenSource: Callie’s CarePage October 27, 2006
Note: Registeration required to access CarePages. Callie’s mom granted permission to post a link to Callie’s Page.
Here is what YOU can do:
Donating miles would be good.
Reserving tickets for the Stapps would be better. **
Donating a private jet would be best.
**Send me an email and I can give you specific instructions on how to reserve a full fair airline ticket with Delta if you have more than 50,000 miles available with Delta.
