Tina Hodgson is mother of 8-year-old Evie, who was diagnosed with a rare blood disorder known as aplastic anaemia earlier in 2020. Evie desperately needs a life-saving bone marrow transplant, so her family have started a campaign called ‘Evie Needs a Hero.’ A match had initially been found quickly, but the donor pulled out a few weeks prior to the transplant, leaving Evie and her family devastated, so a replacement donor must be found urgently.
“Evie is such a strong determined little girl and I have no doubt that she will beat this horrible disease. Evie often says that she was chosen to have aplastic anaemia because she could overcome it, and I believe her! Evie has never complained about the cards she has been dealt. She has adapted so well to her new ‘normal’.”
Living with a rare blood disorder
Evie is such a caring little girl, a little ray of sunshine who is so thoughtful and passionate about singing.
On the 28th May 2020, we were given the devastating news that Evie had severe aplastic anaemia, a serious and rare blood disease for which the only cure is a stem cell transplant. Our world fell apart that day!
A stem cell transplant or bone marrow transplant replaces damaged blood cells with healthy ones. It is a simple procedure for both the donor and recipient (very similar to donating blood).
Evie’s life has significantly changed in such a short space of time. Evie has Bone Marrow failure, so she is not producing the necessary red, white and platelet cells for her body to function properly. Evie is now transfusion dependant as well which means she requires platelet transfusions weekly and blood transfusions approximately every 2/3 weeks to survive. This involves travelling to hospital twice a week which is a three-hour round trip each time.
Evie is now also neutropenic so her body cannot fight the simple bugs and infections. She can no longer attend school or the clubs she enjoys, such as cycling and dancing, which is hard for Evie as she is such a social butterfly! She misses her friends so much.
The risk of internal bleeding if she were to fall over is also high. We literally need to wrap her in cotton wool. Evie has already had numerous hospital stays due to minor infections and had a central Hickman line put in to reduce the anxiety of constant cannulas.
Light at the end of the tunnel
When we found out that there was a stem cell donor match for Evie we were delighted, he was the only match in the whole wide world, but we only need one match to make her better. We were now heading in a clear direction and I love to mentally plan. I am a planner – I like to feel organised and in control.
Everything was going to schedule, and Evie started to be prepared for transplant. For the transplant to be successful Evie would have needed chemotherapy to strip her existing bone marrow to replace it with the new.
Due to the chemo regimen, we were told that Evie would likely go into early menopause before puberty, therefore, Evie had ovarian cryopreservation (ovary removal). I couldn’t bear the thought of Evie not having the choice to start a family naturally. This disease has already taken so much from her, I was not prepared for it to take away her fertility which is why we chose to freeze one of her ovaries.
Evie also had quite a lot of dental work done in preparation for transplant which for any 8-year old is quite stressful!
Back to square one
A few weeks before transplant Evie had been admitted to hospital as she had a high temperature which is a sign of infection. It was during this visit that we were told the devastating news that the donor had withdrawn from donating his stem cells and removed himself from the stem cell register.
Evie was present at the time and burst into tears. I had to hold it together for her but inside I was broken. Evie is such a clever little 8-year-old and understands what is going on, I have always stayed strong in front of her as I never want her to feel scared.
Evie is such a strong determined little girl and I have no doubt that she will beat this horrible disease. Evie often says that she was chosen to have aplastic anaemia because she could overcome it, And I believe her! Evie has never complained about the cards she has been dealt. She has adapted so well to her new ‘normal’.
Evie absolutely loves to sing and play the piano. Singing has certainly been Evie’s therapy throughout this awful time.
During a hospital stay Evie was having a singing lesson with her teacher through Zoom and one of the nurses heard her. She asked Evie if she would do a concert for the ward. Evie was delighted to be asked and agreed. All the doctors, nurses and hospital staff gathered in the corridor outside Evie’s room and Evie performed two songs. It literally brought the ward to life!
Following that, news soon spread, and Evie performed numerous times for different hospital staff and patients staying in hospital. It is little things like this which have been so positive for Evie’s mental health as it has given her something to focus on.
Hospital life, especially during COVID-19, has been so lonely for her. The children’s facilities such as the playroom have not been open, and children have not been able to interact or play with each other. Evie’s singing has certainly cheered everyone up and lifted everyone’s mood which has been delightful to watch.
‘Evie Needs a Hero’ campaign
When we found out that Evie needed a stem cell transplant, we had absolutely no idea about the stem cell register and what donating stem cells involved.
Only 2% of the UK population are registered and we feel this is due to lack of awareness. Even people who donate blood which is a very similar process are not made aware of the stem cell register.
We set up ‘Evie Needs a Hero’ campaign in the hope of generating more awareness and getting more people signed up. Obviously, the more people we can sign up, the greater the chance of finding another match for Evie and so many other families out there waiting for a match.
Initially when we set up the ‘Evie Needs a Hero’ campaign on Facebook we thought we would get a few hundred members but within four weeks we had over 25,000, our girl is making a difference!
Thousands have already joined the stem cell register because of Evie’s story and we are so proud of her, I have no doubt that Evie’s campaign will have saved someone else’s life, which is amazing! But we can’t stop, Evie has not got a donor match yet so we will continue to search for her hero.
William, Evie’s brave 5-year-old brother
Evie’s little brother William decided he wanted to do something to generate more awareness and help save his sister’s life and other people in need of a stem cell transplant.
Therefore, on Saturday 12th June 2021, he is undertaking a marathon cycle ride around the biggest man-made lake in Northern Europe, Kielder Water in Northumberland. A huge challenge for a 5-year-old!
Since Evie’s diagnosis their sibling bond has become so strong and as a mother seeing their relationship develop and strengthen the way it has, has made me so proud. They are very much in this together!
William is fundraising for three charities which have helped us as a family significantly during this difficult time: The Aplastic Anaemia Trust, DKMS, and Anthony Nolan. We are hoping that people will support him on this epic challenge by donating to his Virgin Money Giving fundraising page or even joining him on the ride!
How you can help
Please consider joining the stem cell register. If you are aged between 17-55 years and in good health you can join using this link: www.dkms.org.uk/evie
Donating your stem cells is similar to donating blood, it is such a simple thing to do and you could save someone’s life! You could be Evie’s hero! How amazing would that be?
Evie is such an incredible and amazing little girl with so much more to give. A stem cell transplant would save her life and give her the opportunity to fulfil her dreams.