Bone marrow transplant and donor

Hi,

We are Kayleigh and Luke. Proud parents of Destiny and our 6 other children. Destiny has a very rare condition called Sidreoblastic Anaemia. Destiny needs a bone marrow transplant and on the 28th July after years of waiting she will be admitted for this procedure. Our son, Destiny’s brother LJ is going to be her donor.

When Destiny was just 18 months old our world was turned upside down. Our health visitor mentioned how she looked quite orange and that she would need to have a blood test.

After multiple appointments and hospital stays those blood tests confirmed that she has Sideroblastic Anaemia and that not getting her iron levels under control could be life threatening. Over the next few years Destiny has been on so much medication to try to control her iron and get her well and healthy enough for her transplant. Destiny has blood transfusions every 3 weeks, sometimes every 2.

Her body cannot deposit iron in the way other people can and getting her iron to the right level has been so challenging. Whilst she has been at school, she has had to have a continuous infusion of medication wearing a backpack to hold the pump 24 hours a day. We thought this had worked but it caused liver cirrhosis which meant her transplant was delayed.

After one final medication review, Destiny has been on exjade which has done the job and Destiny is finally ready to have her bone marrow transplant and we as a family can begin to think about her being well and moving forward with her life.

Destiny is having 5 minutes of freedom from port-a-caths, hickman lines and constant medication. She has been able to go swimming for the first time in years and do PE at school without worry about her lines being tugged, pulled and breaking.

Destiny, and our family now face the biggest challenge yet. She will be in hospital for months, receive chemotherapy and will need to isolate from her siblings and family whilst she is in hospital. After she recovers from her inpatient stay she will need to go to hospital at least 3 times a week. It is going to take about a year – 18 months for Destiny to fully recover from this procedure.

We are asking people to raise money through our go fund me to help with the cost of being in hospital for this long, funding meals for me, as her Mum whilst Destiny is an inpatient I only get 2 meals a day and need to pay for dinner. Paying for taxi costs if we need to get Destiny to hospital quickly as we are reliant upon hospital transport. Destiny is going to need lots of new pjs and bits to make her hospital stay as comfortable as possible.

Any donations would be so gratefully received to help our family through this tricky time.

Thank you so much,

Kayleigh and Luke