Committee Members

I have a 15 year old son who has Severe Haemophilia A with inhibitors. I love being part of this community. The bravery of our children and parents never ceases to amaze me, whether it be facing an unexpected diagnosis, dealing with bleeds, undergoing surgery, learning to inject your child, letting them go off to school, standing back and letting them become independant, there is always a challenge to face. There are so many stages families go through to ensure a safe and happy life for their children that, I really wanted to try and bring those families together. I want to help create the opportunities to meet and have some fun, share some stories and experience and, show our mutual respect for one another in all the challenges we overcome.

Kelly has worked with the haemophilia community for over 13 years in a professional capacity through her role in medical education, and is excited to be able to bring this experience to LFWBD in a more formal role as trustee.

"Having worked with LFWBD over the past 6 months or so on the groups social profile, it's clear to me this is a very special community. To be part of a group that is making a meaningful difference to people's lives is a great privelege. Which is why I was thrilled to be given the opportunity to join as trustee, to help support as this important group grows and develops even furth."

My one year old son has severe haemophilia A, and I've always known I was a carrier, but my father sadly died when I was much younger so I've never really seen what the day to day reality of haemophilia is. It feels like we are just starting on our journey, and LFWBD has been such an amazing community as we've done that. Already it has been invaluable to be able to talk to families further along the road than us, to gather knowledge and learn from other people's experiences but also just to be able to chat with people who understand! I'm joining the team in the hope that I can help towards making sure the group can reach as many families as possible and continue to offer priceless support and encouragement to our community.

I'm Anna from Essex; my youngest son was diagnosed as having Haemophilia Severe B Type in 2017 and we were soon navigating an unknown world of bleeding disorders. The community of families walking the walk ahead of us was so supportive. I wanted to become a Trustee for a few reasons, namely as I was proud to be part of this group and saw how needed the group was in its first year. I want to give something back to the community. Without having other families' understanding and support since diagnosis, we would have been lost as a family. I want to ensure the group continues to be a supportive and family focused place where all our children, those with bleeding disorders and their super siblings, feel heard. I've worked with children for years as a social worker and hope to bring my skill set and the importance of the voice of the child to the group.

I decided to join the committee for local families with bleeding disorders because our son Ollie has severe Haemophilia a, and I think that it would be wonderful to help bring families like our own together. So that we are able to not only share experiences with each other, but also learn from others too.

I'm so happy to be a part of this amazing group.
When I started my fund raising, I really was not aware just how much it brings us closer together as a family. When preparing for an event we all get involved!
In the past, we never really spoke about Lenny having haemophilia because it used to drive me crazy people thinking it is contagious!! Since I've been doing events, Lenny is loving life. He feels like a celebrity (and wants to be one!!) he will chat about everything.... his struggles.... the positives.... how he deals with haemophilia.
Before now, I never really knew what he thought about his haemophilia as I was always on auto pilot (making sure I was his nurse and giving him his medication) so, to be able to give back to a fantastic support group and see everyone together, parents sharing stories and boys comparing bruises (and port scars) and, their stories about their scars (Lenny apparently had been attacked by a shark!), makes my realise we are all in the same boat. And to be around everyone dealing with our daily struggle, makes me feel a lot more relieved it's not just me going through it. Lenny can see all other boys with the same "special blood" also makes him feel "normal".
So, watch this space..... I have lots of plans!

Christina originally trained as a counsellor with British airways many years ago so the importance of psychological support has always been a passion for her. She became Head of Services at The Haemophilia Society in 2014, and, during the four years she was there, devised and developed many of the services of support that are there to the present day. During this time, she became completely committed to the bleeding disorder community, recognising what a special and unique community it is. Christina left the Society in October, 2017. She decided, having realised that there was a lack of effective, accessible, FREE psychological support available for people with a bleeding disorder and their families and carers, to set up HBDCA (Haemophilia and Bleeding Disorders Counselling Association).

Christina is a long-standing member of the Inhibitor Working Group for the European Haemophilia Consortium and is a member of the newly formed Psychosocial Working Group for the European Association for Haemophilia and Allied Disorders.

Christina was honoured to be asked to be a committee member of Local Families with Bleeding Disorders. She is in awe of all parents (knowing what a great job they all do in caring for, and advocating for, their children), as well as being full of admiration for the group and how brilliantly it has developed, grown its membership, fundraised and spread awareness in such a short space of time! Hopefully, Christina may be able to contribute in some small way to the wonderful work being done by you all.

Hi, I'm Gemma and live in North Oxfordshire, a little way from the rest of the lovely LWFBD team. With there being little in the way of support in our local area, LFWBD's have been amazing and I've met so many lovely friends through the group.

My son Zane, has severe haemophilia A, diagnosed at a year old and is a happy, healthy 10 year old living with the challenges that a bleeding disorder brings. I also have a 13 year daughter, Summer, who may be a carrier and I'm keen to support those women that have bleeding disorders too.

It's taken me a while, but I am now keen to give back as we are so grateful for the care and support we have received so far on our journey. I'd love to help those that are in the same situation as us and that's why I've joined the committee. With my previous experience in marketing to help me and my desire to upskill, I am currently involved with launching a LFWBD database and keeping the website up to date.