Filip’s journey with Fanconi Anaemia

Hello everyone,

We are reaching out to this community with a fundraiser to help my son in his battle with a rare disease. We also want to share awareness of this rare condition which is not always visible.

Filip, who is now 5 years old, was born with a rare genetic mutation, Fanconi Anaemia (FA). He was diagnosed when he was 2.5 years of age. He lives with his mom, dad, and older sibling Nicole in the UK.

Filip presented some of the signs at birth, such as the extra digit to his left hand, short stature, and café au lait spots, however doctors were not concerned about these and advised only the hand surgery, to remove the extra thumb.

Before Filip’s first birthday, we went abroad to seek some answers to his symptoms since I was not comfortable with the advice received at birth. We have consulted Paediatricians, Neurologists, Medical geneticists, Haematologists, Nutritionists in 3 different countries. After multiple blood tests, he was finally diagnosed at age of 2.

FA is a rare form of Aplastic Anaemia (DNA repair disease) that causes gradual bone marrow failure, and the symptoms appear in early childhood. People with FA are at much higher risk for: Myelodysplastic syndrome, or Leukaemia, solid tumours, including cancers of the head and neck and cancers of the reproductive system. They cannot be exposed to any chemicals, toxins, alcohol, sun, radiation mainly because their bodies cannot detox properly. There is no cure for FA at this time.

Filip started to show advanced symptoms at 3 years of age (after fighting a bad winter cold treated with antibiotics and asthma medication), when his Platelets started to drop, followed by his White and Red blood cells. He was stable for about 2 years, until November 2023 when it got into critical stage and needing now a Bone Marrow transplant.

With much luck and help from our doctors, three donors were found that would help give Filip the childhood he deserves.

His operation is scheduled for February 2024 and currently going under several medical check-ups to ensure he is ready for the procedure.

For us, since finding out about the condition was a constant search and battle to offer him our best support in terms of nutrition, best medical care (FA specialist) which obviously came with a cost we happily covered so far and glad we were able to do it.

I am conscious that we have a long road ahead of us, emotionally (constant worries) and financially (additional medical expenses, travel expenses, lost time of work pre and post-transplant).

I see myself in the position of, needing to take a break from work and be his career, be there for him. This will add an even greater financial pressure, therefore anything you can do to HELP would be appreciated.

❤️ Well wishes, thoughts, and PRAYERS are always welcome. ❤️

Also please consider registering for the bone marrow registry and donating blood!

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