Brooklyn has CD40 Ligand Deficiency also known as Hyper IgM syndrome- a one-in-a-million primary immunodeficiency. Brooklyn's parents. Matthew and Natassia tell us about their son:
Brooklyn was born in July 2022 - 11 days early, and a very quick journey from waters breaking to the hospital. The reason for his name came from the fact we had our first date in New York whilst working in America and walked across the Brooklyn Bridge together. A few years later we got engaged in Central Park.
Brooklyn loves watching Ms Rachel, Elmo and Gabbys Dollhouse, bashing his toys about and listening to noises of different animals. His favourite is a pig :-). He’s a happy smiley boy who never lets anything get him down despite all he’s been through at such a young age.
In January 2023, Brooklyn had a severe cough that wasn’t getting any better. After bringing him to A&E he was admitted to the children’s ward with his oxygen levels at approximately 80%. Time went on and he was still having regular coughing fits so severe that he was vomiting and regularly dipping to the low 70s in oxygen saturation. X-rays showed severe cloudiness on the lungs and what looked like pneumonia. Eventually, after having his immune system tested due to not being able to recover or respond to normal treatments, he was transferred to the specialist units at the Royal Victoria Hospital.
Following blood and genetic testing Brooklyn was officially diagnosed with CD40 Ligand Deficiency also known as Hyper IgM syndrome- a 1 in a million primary immunodeficiency. In summary, his body cannot produce antibodies to fight viruses and infections. His body does not have the ability to switch from the IgM antibody to other antibodies such as IgG, IgA or IgE.
The different antibodies perform different functions in the body, and without the majority of them being able to be used you can imagine there is a lot of things his body can’t fight. The reason why he can’t switch is due to the missing CD40L protein gene. CD40L allows T cells to bind with B cells and signal the body to then produce the particular antibody required. He is, therefore, susceptible to all kinds of infections, particularly opportunistic infections and to some types of cancers. Brooklyn’s life expectancy as a result is significantly reduced with the average life expectancy being 24 years old.
His treatment started before his actual diagnosis in March 2023, due to specialist immunologists thinking it was highly likely this is what he had. Brooklyn undergoes immunoglobulin therapy, essentially a transfusion of antibodies, every two weeks. He also takes medications every single day. These range from antibiotics to antivirals and antifungals; they act more as preventative measures to help protect him as much as possible. However the only known cure and chance of prolonged life is an allogeneic hematopoietic stem cell transplant.
He is travelling to Great North Hospital in Newcastle for a bone marrow transplant assessment where his search for a donor begins.
We would encourage anyone to sign up to be a blood stem cell donor. Not just for kids like Brooklyn but for millions around the world suffering from blood diseases, cancers and immunodeficiency who need transplants. You could be someone’s second chance at life and their cure.
What could be more impactful than that?