As our close friends & family know, Jaxon was born with 22q11.2 deletion or more commonly referred to as DiGeorge Syndrome. Those of you who have followed Jaxon’s story over the past three years are very familiar with how medically complex he is. For those of you who don’t know, here is a brief summary of Jax’s story.
Jaxon was born on Feb 23, 2018. Within hours after birth we knew something was terribly wrong. Jaxon was rushed to the local Children’s hospital where it was found that he had five different heart defects. One of those defects, Interrupted Aortic Arch, made doctors immediately suspect that Jaxon had genetic condition known as DiGeorge syndrome, the partial deletion of the 22nd chromosome. Genetic testing would later confirm their suspicions. Jaxon underwent his first open heart surgery at just 11 days old. At about 6 weeks old he had his second open heart surgery. He would eventually have a g-tube placed because he was unable to eat by mouth, a trach placed because his airway was too floppy to breath without the help of a ventilator.
Jaxon spent a total of 255 days inpatient at Children’s of Alabama before he ever went home with his family. Jaxon’s health has not only improved he is THRIVING! He has even (mostly) kicked the home ventilator and uses it only when he’s sleeping.
However, Jaxon is now three and still can’t walk. While it’s not out of the picture for him, it will most likely be a long time before he does walk on his own. Jaxon’s rehab doctors have recommended a wheelchair. The process is long and we’re still waiting to receive it but it has been approved by insurance.
The need now is a bigger vehicle. Jaxon, all his medical equipment, and his six-foot, 12-year-old brother (who is STILL growing) hardly fit in the one they have now. Going anywhere as a family is extremely difficult. Once they trade out his stroller for a wheelchair it will be almost impossible. Any help, donation or share, to this cause would be greatly appreciated.
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- tracey magana
Organizer and beneficiary
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