Things seemed to be doing OK until a weight check around 4 months raised red flags that she was falling off her growth curve. A few weeks later she was admitted to Phoenix Children's Hospital to be given an NG tube, to supplement her feedings. After two weeks she started vomiting and did not seem to be tolerating the tube in her throat. She lost weight and was readmitted to the hospital at 5 1/2 months. We made the decision for her to get a G-tube put in surgically. She seemed to be recovering fine, but two days later while still in the hospital started throwing up large amounts of blood. She was rushed to the PICU for blood transfusions and doctors found that she had esophageal vertices bleeding into her stomach, because of scaring in her liver. Doctors were shocked and turned to genetics to find a reason why things were getting so bad.
The genetics test gave us the devastating news that she was suffering from a very rare genetic disorder, Gaucher's disease type 2. This disease was filling her liver, spleen, and eventually her brain with waste material from her body that cannot be broken down. She was given the outlook that she could live to be two years old to maybe 4 years. However her symptoms started very early in life. We pray for God's best for her, with many people all over the world sending their love and prayers.
At this time we need help with living expenses, as Clinton and myself are not working. Clinton has been searching for work for a while, but I am really grateful to have him at home right now where he is so needed. Aaliyah has already spent close to 4 weeks in the hospital since mid-June, and there will be more adjustments to figure out which leaves us stretched thin between Aaliyah and caring for our other children. We also anticipate other expenses having to do with traveling back and forth to hospital and doctors, and keeping her comfortable at home.
We are so grateful for amazing support of friends and strangers near and far, you give us so much strength through your love, prayers and care for our family.
DonationsSee top donations
- Kristal Sidener
- Stanton & Rebecca Petersen
- Linda Sale
- Hannah Collier
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
In the rare case something isn’t right, we will work with you to determine if misuse occurred. Learn more
Contact us with your questions and we’ll answer, day or night. Learn more