For Pete's Sake Foundation - PJ's Story

PJ was born with Wiskott-Aldrich Syndrome, a rare genetic disease that robs children of their auto-immune system. As his mother battled breast cancer, two-year-old PJ underwent a bone marrow transplant and a traumatic six-month recovery. Sadly, his mother lost her battle with cancer, but she lived long enough to see PJ emerge as a healthy, happy little boy. Friends pooled their resources to help PJ's family. They took it a step further and established the For Pete's Sake Foundation to support families of children with rare diseases. This is PJ's story.

Category:

People & Blogs

Tags:

• Wiskott-Alrdrich
• Syndrom
• rare
• childhood
• diseases

[tlb625]

I never expected to see a video on Wiskott- Aldrich. My son, who is now 24, has just recently been diagnosed with the disease. Up until then, we were told he had ITP, which as we found out is only a symptom. As a parent, I am devastated at knowing the probable outcome, escpecially as he is past the age where a transplant would help. Any support group information would be greatly appreciated. I am thrilled your son has recovered. Wish you well

TLB625

[brennanrobison]

Thank you for commenting on the video. I am sorry to hear about your son. The For Pete's Sake Foundation exists to help families of children with Wiskott-Aldrich Syndrome as well as other rare illnesses. Please visit our website and feel free to register so we may contact you directly about our support services. Take care.

[kirkferentzrocks]

This video was very moving. I am a first year meidcal student. Thank you for the clip. I have a greater understanding for what these families go through. It is also very sad to hear that she lost her battle with cancer.

[berwil11]

Our son was being followed for what was thought to be acute or chronic ITP! Further testing confirmed that he has WAS. We have to meet with the doctor in the next few days! His uncle who in the past was followed for ITP will pass the same test as my son to determine if he too has WAS, XLT or simply chronic ITP. He his 29 years old and never received any treatments of any kind. Doctor is shocked. Our son is 16 months old. What should be the questions to ask the Dr?

Thanks in advance God bless

[tatepry]

Hi - just wanted to say hello - my son too has WAS and I too had cancer when I was pregnant with him. Strange?

Sue

[sambiap]

You've had a really hard time. So glad pj is happy and doing well.How's mum doing? Is your cancer gone? Really hope so. Wishing you well.