‘I love him every day that I have him. He’s such a resilient and powerful young man. And he’s here for a reason.’
Giovanni Guglielmo lives in Belmont, New Hampshire, USA with his parents Christina and Michael and his half-brothers. His father used to be a carpenter – but now devotes his time to running a leading bone-marrow movement in the USA.
Cord blood can save lives. But only if you can get a match. And that depends of having enough donor samples.
And if you have a mixed genetic background, it can be harder finding the crucial match.
It was like that for Giovanni Guglielmo a toddler with an Irish, Italian and Greek background.
Just over a year ago they found a cord blood match for Giovanni – it saved his life, but not necessarily his quality of life … not its certainty.
For Giovanni suffers from NEMO – a very rare x-linked chromosomal disorder. NEMO is a genetic disorder which can compromise a number of body functions – like growing hair, the skin, eyes, bone growth, intestines and the immune system. Only 60 children in the world have it. It’s sometimes known as the boy in a bubble syndrome.
He initially had a fever and went to the doctor who thought it was just a cold but it persisted. Later, in hospital, doctors tried a range of antibiotics to deal with bacteria. Then he came out in a rash.
Then there was the meeting with doctors that parents dread. Their baby had an immune disorder and his survival could be as low as 50 – 50.
It’s unclear how Giovanni’s future health will unfold. He could be fine. He could have minor skin problems. He could go blind.
In the meantime, Giovanni’s father is determined that other patients needing donors will be more likely to meet success in future. He heads the Save Giovanni's Friends Movement.
He applauds the Anthony Nolan Trust’s drive for accumulating cord blood. He said:
‘There are not a lot of cord blood banks, and a lot of hospitals are just not interested. But this is a world-wide problem. There are only 11.3 million people registered as bone marrow donors in the world. Yet there are 6000 new inquiries a day for donors. However, only 2 out of 10 find a match. We need to do more. We need to educate.’
He said that Giovanni is his inspiration:
‘I love him every day that I have him. I take each fight as it comes. He’s such a resilient and powerful young man. And he’s here for a reason – to inspire more and more registration.’
