Help Adam in his fight against neuroblastoma

Brief summary: Our son Adam was diagnosed with Neuroblastoma, a rare form of childhood cancer, in 2022 at the age of three. Everything collapses for a moment then gives way to a long fight of many therapies. Neuroblastoma affects about 30 babies a year, is aggressive and has a very high chance of recurrence even after cure. To significantly increase Adam's chances, of a disease free future, we need financial help now. This so that Adam can immediately after immunotherapy use the DFMO therapy which is not reimbursed within the EU but is enormously important and contributes to a Neuroblastoma free future.

Every donation how big or small contributes to this. Please share the donation campaign as much as possible.

Full story:

Adam

Adam is always a happy, friendly and energetic little child. Crazy about being outside, riding his bike and going to the playground. Until in the spring of 2022 Adam is tired a lot, gets a fever daily and falls asleep even in the playground.

The diagnosis and treatment

After previous doctor visits, Adam is diagnosed with Neuroblastoma on Aug. 25, 2022. A tumor of about 6.5x5cm in his adrenal gland with metastases throughout his body. At that moment, our world briefly collapses and a long journey of many therapies begins. The first series of chemotherapy does not do what we so hoped and we divert to another form of chemotherapy. This one does work and provides relief, but even then, we are far from there. Adam receives MIBG therapy after many courses of chemotherapy, which involves administering radioactive iodine for which he spends 2 courses of 5 days alone in a special isolated room. Again Adam, tough and positive as he is, does this like a real little hero. This is followed by an operation, heavy chemotherapy and radiation therapy, before being allowed to start Immunotherapy. During the less severe cures Adam is only too happy to cycle around on the infusions in the Prinses Maxima Center. (photo)

The current situation

Adam is currently in the middle of his 3rd immunotherapy course, this is a "maintenance course" to reduce the chances of Neuroblastoma returning and to clear out any remaining cells. Unfortunately, the chance of recurrence is still very high after this therapy. As parents, this makes you think. On the one hand, we are very grateful for where we are now, but on the other hand, we are full of fear. 50% of the children with a stage 4 Neuroblastoma get the disease back within the first 5 years. This is truly a terrifying scenario that we would really like to prevent and for which we really need your help.

Our wish for Adam

In 2010, after 5 years of research, a study started with the existing drug DFMO. This as a maintenance therapy for children with high risk stage 4 Neuroblastoma. Many studies and good results later, DFMO was approved by the FDA in Dec. 23 and this maintenance therapy can now be used in the USA for children with Neuroblastoma. In Europe, we are unfortunately not at this point yet. This while DFMO is an important successor to immunotherapy and greatly reduces the risk of neuroblastoma recurrence. This shows the great results of the studies that have taken place in the last 13 years. It can be read that DFMO reduces the chance of recurrence by as much as 20%. This is obviously a huge opportunity that we cannot take away from Adam.

We really need help NOW

DFMO (the medication) is in fact not covered by health insurance. In order to give Adam this opportunity, we will have to travel to the USA and pay for the therapy ourselves. DFMO therapy has a duration of 24 months in which daily medication must be taken and periodic evaluation examinations will take place. As you might imagine, this will cost an enormous amount of money.

The money needed for this is expected to be more than 315,000 euros. This is an amount that we do not have at our disposal. We would therefore like to ask everyone to please contribute where possible. No matter how large or small the amount, EVERYTHING helps. It is also of enormous value to share this donation action as much and as large as possible, because together everything works!

*If we get the chance to offer Adam this therapy and there is money left over from the donation campaign we will donate it to the Villa Joep foundation. Villa Joep is dedicated to children with neuroblastoma.

In this way we are one step closer to DFMO in the EU for all children who need it.

Thank you for reading our story, donating and/or sharing.

Kind regards,

Nicky & Moussa Oumouh