FAULTY GENE TO MY BABY
I have low levels of the clotting factor and bleed a lot after surgery.
“I bled in childbirth and I bruise very easily. It is a lot to take on board and I feel so guilty about passing the gene on to Jake.”
There is no cure for haemophilia A. Preventative treatment in the form of prophylaxis injections (a synthetic form of the clotting agent factor VIII) are administered every 48 hours and parents are trained to do this at home.
At the age of one, Jake had an operation to fit a portacath (a device which sits under the skin and is connected to a vein) under his arm, which means Hannah and Russell can administer the clotting agent more easily. Jake is now on a new trial with a longer-acting agent given every three days. That extra day’s break from administering the treatment (with Jake having to sit very still throughout) has made a big difference to their quality of life.
Hannah says: “The prophylaxis treatment has become part of our lives. One of the hardest things is leaving him with other people. My husband and I are the only ones who know what to do if he has a bump, bleed or portacath infection. I only leave him with family and I think nursery is going to be a shock. Yet Jake has met all his milestones and we try to make sure he has as normal a life as possible. He is like a whirlwind, he doesn’t stop.”
The Haemophilia Society has helped Jake’s family. This year, the charity will receive a grant from funds raised on Jeans for Genes Day.
The Haemophilia Society is a Jeans for Genes Day 2017 grant charity. Jeans for Genes Day is on Friday September 22 and invites everyone to wear jeans to work or school and make a donation. Visit jeansforgenesday.org to sign up for your free fundraising pack. Interview by LAURA MILNE