Jodie’s Story

When we attended the newly diagnosed family weekend in Longleat in 2018 Thomas was 9 months old. Before arriving I felt very anxious about the weekend as everything was new to us as a family. While there we met the lovely ambassadors Matt and Luke. They allowed me to insert a needle into their vein for experience. (I had a massive phobia of needles).

We met ten lovely families and myself and the other mams still stay in touch now and speak about our experiences. In November 2018 (on his birthday) Thomas had a Hickman line fitted and coped well with everything. He missed swimming as he was such a water baby but with my phobia I wasn’t personally ready for the port but learning from experience and the support from the staff at ABC clinic in UHW I wished we had the port fitted sooner.

In August 2019 Thomas had the Hickman line removed and the port fitted. It was signed off within 3 weeks and giving treatment every other day. Thomas was such a brave boy throughout it all. His big brother James helps me get the treatment ready (while wearing the gloves) he also then sits next to Thomas and talks to him while treatment is given. Thomas helps by taking him numbing cream off with the gauze and then applies his plaster.

If it wasn’t for the weekend away that we attended in 2018 we wouldn’t be the happy comfortable family we are now. Without the help and support from everyone we wouldn’t be comfortable doing what we’re doing. (In June/July 2019 before Thomas had his port fitted the nurses at ABC clinic arranged for me to have hypnotherapy to help with my phobias and thankfully that worked) I am so greatful.

When Thomas was born I thought I needed to wrap him up in cotton wool and protect him from everything but what haemophilia and the weekend taught me was that Thomas can do everything and anything; there are no boundaries and we shouldn’t be afraid of anything. He is the most active 2 year old I know who isn’t frightened of anything. Thomas has only ever had 2 bleeds and that was from his immunisations as a baby. The treatment is amazing and he has adapted well to it. (1000ui Elcota). I’d personally like to thank you all for allowing us to meet families in the same situation as us and for providing us with support. (Haemophilia Wales Xmas parties, coffee mornings, and friends that will last a lifetime)
Thank you!

The haemophilia society matters to me because over the last 2 years we have been able to meet amazing families going through the same experiences as us. We have been able to attend family fun days organised by the amazing Lynne Kelly from Haemophilia Wales. We have been able to maintain long distance friendships with people we met at the newly diagnosed weekend from England, Scotland and Wales. It matters to me because it has taught me that a child with haemophilia can do anything and the world is their limit!