Natassia and Matthew’s son Brooklyn was diagnosed at 8 Months old with X-Linked CD40 Ligand Deficiency (also known as Hyper IgM Syndrome). X-Linked Hyper IgM compromises the body’s ability to produce antibodies to pathogens such as bacteria and viruses and are therefore at significant risk for opportunistic and repeated infections.
Here Natassia shares why they decided to fundraise for Immunodeficiency UK and what activities they took part in to raise funds.
Brooklyn undergoes fortnightly immunoglobulin replacement therapy as well as taking prophylactic antibiotics, antifungal and antiviral mediciation. These keep him relatively stable but is not a cure – the only known cure is an allogeneic hematopoietic stem cell transplant. Brooklyn has a full unrelated match and is due to have a transplant in Autumn 2023.
Why we decided to fundraise
We wanted to raise funds for Immunodeficiency UK and other charities to help raise awareness for all of those living with a PID and the constant worry of illness and sickness that comes with it. There’s so many articles and support pages provided by Immunodeficiency UK that were invaluable to us post diagnosis with understanding more about Brooklyn’s condition.
What we did to fundraise
A lot has been done to raise funds so far, with many family members and close friends pulling together, some of these include:
- 5km run for 50 days
- 5km charity walk
- X2 charity football matches
- CrossFit challenge
- Goggins challenge (run 4 miles, every 4 hours, for 48 hours)
- BBQ and bake sale
Thanks so much Natassia and family.
