Mia- liver and bone marrow transplant

Hi we are John and Laura and our daughter is Mia

At the end of 2021 about a month after our son Max was born our daughter Mia became unwell. After numerous trips to the GP we finally got admitted to our local hospital after a blood test came back with some concerning results.

1 week later we were transferred to the oncology unit at the childrens hospital where they thought she had leukaemia or lymphoma. Fast forward after lots and lots of scans, needles and biopsies this was ruled out, but it was suspected there was a problem with her liver.

We were then admitted to a different hospital that specialise in livers, where we found out she had the beginnings of liver failure. After many more scans, scopes and more biopsies we had ruled lots out, but still could not find the cause. Mia now also needed a feeding tube to help with nutrition and was also diagnosed with bronchiectasis (damage to the lungs)

With all the most likely things ruled out and over 1 year in of being in and out of various hospitals; we had full gene panel done.

After waiting another 12 months and several

more hospital stays due being unwell- we finally had the results and we were told Mia has a very rare autoimmune disease called DOCK 8 deficiency.

This deficiency in Mia’s case means that her immune system doesn’t work as it should which was what had lead to the liver disease, lung scaring and also makes her extremely high risk for developing malignancy.

At the end of February 2024 Mia had gone into end stage liver failure and she was listed for a transplant.

After just 10 days of being activated on the list we got the call to say we had a donor and Mia received her new liver! There was a 20-30% chance Mia would not survive transplant, but she is a tough cookie and made it through the surgery.

However, this is just the beginning of a long journey as once she is stable enough Mia will have stem cell transplant to replace her own immune system with one that works. This is risky and comes with more potential complications.

She will be need to undergo chemotherapy first to remove her current immune system then have the transplant. Because of the ongoing medical conditions she has she is going to be more prone to infection which can be life threatening when you are immunocompromised.

The last 2 and a half years have been an absolute rollercoaster for us as a family. We have had to take significant time off work using all of our holidays and sick leave.

We know that with the cost of living people are having their own struggles and by no means do we want to pressure people into donating.

in the last few month we have had help from from charities such as:

The Sick Childrens Trust

Rainbow Trust

Millie Wright Childrens Charity

Make a Wish

Anthony Nolan

Childrens Liver Disease Foundation and a few more.

What would we use the donations for ?

Day to day living costs of being in hospital and

travel cost of being away from home.

We would also like to give back to the charities that have helped as well.

This is a very brief description of what our daughter has endured the last couple of years. If you would like anymore information please don’t hesitate to ask.

Thanks

John, Laura, Mia and Max