Evie is 11 years old, she will be 12 on Tuesday 16 March. She is a huge Arianna Grande and Billie Eilish fan and loves drawing, playing on her X-Box, watching Tik-Tok and YouTube.
Evie was born in 2009 and was a healthy weight of 7lbs 7oz. For the first few months she thrived, but after a while she started to lose weight and was sick a lot of the time. We were referred to our local hospital in Birmingham when Evie was 15 months old and this is when she was finally diagnosed with Common Variable Immune Disease – an antibody deficiency which means Evie’s body is unable to defend itself against bacteria and viruses. For the next five years, Evie had weekly subcutaneous immunoglobins – antibodies injected into her system – and once again she was thriving.
“The staff at Crawford House have been absolutely amazing and go out of their way to ensure that your stay is as comfortable as possible.”
Unfortunately, after the birth of our second daughter in 2016, Evie’s health deteriorated. She lost lots of weight and stopped growing completely. Even though Evie ate lots, she didn’t put on any weight. Evie went through many tests and examinations including a bone marrow transplant assessment in 2018. At the time it was decided this wasn’t necessary but in January 2020 Evie weighed less than she did in 2018. She was 11 years old and under three stone. She also had many other medical issues such as problems with her liver and rashes on her skin so we were listed for a bone marrow transplant. It is now believed that Evie has a rare undiagnosed Combined Immune Disease.
Her transplant would need to be carried out in Newcastle as there are only two specialist hospitals that deal with conditions like the one Evie has. We were told that our minimum stay in Newcastle would be 12 weeks, and living in Birmingham you can imagine Newcastle felt like a million miles away from home.
We were admitted into The Great North Children’s Hospital at Newcastle’s Royal Victoria Infirmary on Thursday 9 July, where Evie spent 11 weeks on intravenous nutrition (TPN) to build up her strength for the transplant. On Wednesday 23 September we were admitted onto the ‘Bubble Unit’, a ward in the hospital with ten specialised rooms designed to protect patients from infection. Here, Evie received a week’s intensive chemotherapy followed by her transplant.
“Crawford House has meant that I am able to be close to Evie and Lucy at all times which is a huge relief. If it wasn’t for Crawford House I honestly don’t know what we would’ve done as the cost of a hotel or renting somewhere is huge and we still have to pay for a home and bills back in Birmingham.”
When we were initially told that we would be in Newcastle, we were really anxious and concerned. I knew that Lucy (Evie’s Mum) would stay with Evie on the ward but was unsure of where I would be able to stay, and obviously the financial implications this would have. Our social worker told us about Crawford House and fortunately I was given a room on the first day Evie was admitted. I have been staying in Crawford House for six months now. I had never even heard of The Sick Children’s Trust before and cannot believe the outstanding work the charity does for families. Crawford House has meant that I am able to be close to Evie and Lucy at all times which is a huge relief. If it wasn’t for Crawford House I honestly don’t know what we would’ve done as the cost of a hotel or renting somewhere is huge and we still have to pay for a home and bills back in Birmingham. Also, it would have been difficult to find accommodation close to the hospital. Being a few minutes away at Crawford House meant that Lucy could phone me any time Evie was particularly unwell or Lucy needed support and I could be there within minutes.
We remained on the Bubble Unit for 13 weeks and it was a rollercoaster to say the least. Evie endured so much and it was very difficult for us as a family. The care we received from the Bubble Unit was outstanding and we will forever be grateful for their care and support.
We are now on another ward where Evie is slowly recovering. Hopefully soon Evie will be well enough for the three of us to move to a local hotel (provided by the hospital) where we will stay for approximately six weeks. This is so that Evie can take a step towards going home but is still close to the hospital, as she will still need to be seen at least three times a week.
These last six months have been hard, and the pandemic has made things all the more difficult. Unfortunately we have not been able to see our four year old daughter for four months which is so upsetting for us as a family. Evie really misses her sister and Christmas day was particularly hard not being able to be together. However, we are grateful that Evie seems to be doing well and that is all we can ask for.
Although it has been tough, having Crawford House has eased the pressure for our family. The staff have been absolutely amazing and go out of their way to ensure that your stay is as comfortable as possible. They are always friendly and ask how my daughter is doing – it can be a very lonely time being away from home, separated from family with the huge worry of what your child is going through.
Hopefully in the near future we will be able to return home to our family. When we do, we will never forget what The Sick Children’s Trust and Crawford House did for us as a family and we will continue to support the charity in any way we can.
Neil Timmins, Evie’s dad