Staying together as a family has helped Lauren grow up as a very strong and brave little girl, who we are very proud of

Our nine year-old daughter Lauren, was born with a condition which causes immune deficiency, called leukocyte adhesion deficiency type 1. Sufferers are unable to fight infections and the only cure is a successful bone marrow transplant (BMT). In January 2006, Lauren had her first transplant in Great Ormond Street Hospital (GOSH).

We stayed at Guilford Street House – a ‘Home from Home’ provided by The Sick Children’s Trust. We were so grateful to have been offered free accommodation because it enabled Angela and I to both be there for Lauren, and stay together as a family. Unfortunately that transplant was unsuccessful. Lauren was left with her original immune deficiency condition and in need of a second BMT at some point in the future.

In July 2014 Lauren fell seriously ill with an airway infection and had to be rushed to GOSH to have a tracheostomy fitted, keeping her airway open and enabling her to breathe. She was also treated with intravenous antibiotics. Again, during Lauren’s time in GOSH, The Sick Children’s Trust put us up in a special self-contained transplant flat which was part of Rainbow House. The flat is designed for families with children undergoing the bone marrow transplant process and is just a few minutes’ walk from the hospital. It provides a transition between hospital and home, when children are still too ill to return home due to their weakened immune systems, but no longer need total isolation on a hospital ward.

Thankfully, Lauren made a full recovery from the airway infection, and a BMT was planned for January 2015. Prior to being discharged, Lauren was able to stay with us at the flat which meant we were able to cook and eat together, and behave as if we were back home. Having somewhere to stay so close to GOSH allowed us to become confident in administering Lauren’s medications, which we were going home with, whilst being close to the hospital if we needed support.

The house managers have been fantastic over the years, always offering to help where they can, talking with us and asking how Lauren is getting on. Taking time to simply prepare a meal, or crash out for a short time makes a huge difference in being able to recharge a little and continue to be as strong as possible for Lauren.

Lauren’s transplant earlier this year has so far been successful, and she is in the early days of recovery. It is still too early for us to be confident she is through the worst, but we remain hopeful and positive that she will have the life she very much deserves.

We live over 150 miles away from London, so without The Sick Children’s Trust, we wouldn’t have been able to stay together as a family. Having the bedroom, bathroom, kitchen and living facilities allowed us to take it in turns to stay with Lauren each night, while the other was able to take some sort of break to try and relax a little.

As with any sick child, they always want to be with their parents. Being so close to her while in hospital allowed us to provide support for our daughter when she needed us most. Being together as a family unit over the years has helped Lauren grow up as a very strong and brave little girl, who we are very proud of.

Words cannot describe how grateful we are for the support The Sick Children’s Trust has given us over the years, allowing us to be together as a family. A friend of a friend wrote and recorded a song about Lauren and our daughter designed the artwork for the cover. The song is available on CD or you can download on ITunes and we have decided to split the money between our local hospital, Anthony Nolan, and The Sick Children’s Trust.

Lee Edwards, Lauren’s Dad