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Help Save Hadi

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I am Mohamed Hadi but everyone calls me Hadi. I am ten years old and I have been battling acute lymphoblastic leukaemia since I was four.


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Watching your child grow and move forward through developmental milestones - learning to sit, to crawl, to take their first tottering steps - what a joyful time for every parent! How frightening is it to then have to watch your child suddenly seem to recess rather than develop? That is exactly what my husband and I experienced back in 2010 on New Year's Eve.

When everyone was celebrating the start of the New Year on the 31st of December 2010, we received some devastating news. After going through a period of unexplained illness, our son had been diagnosed with what all parents don’t even dare think about; CANCER! Specifically, acute lymphoblastic leukaemia. Those three words have been plaguing us ever since.

Hadi started off with chemotherapy, which was really difficult for us. There are few things worse than having to watch your child endure chemotherapy. Gradually, over time, with the frequency of chemotherapy decreasing from intense, to once a week and then eventually quarterly, we started to adapt to the effects of his treatment. After three and a half years, we were given the good news of Hadi being in remission. We were joyful, but more than that, much more than that, we were thankful.

In March 2015, we went for a regular check with Hadi’s local consultant, Dr Lynn Riley, at Barnet Hospital. After his check up, she urgently requested a sample of Hadi’s blood. She called us on the phone, which I found strange because previous to that date we only spoke in person or through her secretary. She informed us that the blood sample analysis indicated that the leukaemia had returned and that she wanted us to go to Great Ormond Street Hospital urgently for a bone marrow aspirate; Hadi had unfortunately relapsed. As a child, Hadi was very disappointed and frustrated since we were planning to go on holiday and this changed everything. As parents, we were terrified.

Hadi was treated again with chemotherapy, but this time, it was a much stronger dose over a course of five weeks. Unfortunately, as the weeks passed by, we were told that the cancer was not retreating quickly enough. The treatment was not working. The medical team at Great Ormond Street Hospital said that bone marrow transplant would be the best treatment for him. In August 2015, radiotherapy along with chemotherapy was used to try to eliminate all of the cancerous cells. However, as a result of the treatment, the rest of his immune cells were also lost. It was extremely painful for us as parents to see what was happening to our little boy. The radiotherapy was followed by a bone marrow transplant from Hadi's father in November 2015. Thankfully, the transplant was successful. Again, Hadi was given the all clear and we thought that he had finally beaten it.





In mid-February 2017, our son’s nose was bleeding intermittently and he was feeling generally unwell. We initially thought it was a bug related illness. Nonetheless, we went for an emergency check up at the Paediatric Assessment Unit of A&E, feeling more anxious than any parents have ever felt. After a blood test, it was confirmed that his platelet count was low; Hadi was having an acute lymphoblastic leukaemia relapse. We had once again been lulled into a peaceful daydream only to find that it was, in fact, an insidious nightmare, resurrected to torment us relentlessly.

At this point, the medical team at Great Ormond Street Hospital could no longer provide conventional therapies such as chemotherapy and radiotherapy and advised that it would be best to look into experimental procedures. I would like to go on record and praise the team at Great Ormond Street because, despite this torrid journey, they have been incredibly kind and helpful throughout. We would also like to thank them for considering Hadi for a Phase III Inotuzamab trial. Thankfully, Hadi was eligible for the trial. We realise that this is the last weapon in their arsenal. As it is an experimental treatment, we appreciate that they can offer no promises. At the moment, all we can do is hope for the best.

The medical team did mention another experimental procedure - CAR T-Cells, a novel approach that has led to a complete remission of childhood leukaemias. Unfortunately, CAR T-Cell trials are not currently running in the UK and the only place where there are CAR T-Cell trials is in the US. While Great Ormond Street Hospital are trying their best to get a CAR T-Cell trial set up and running, this will unfortunately take time, and time is not on our side. If trials do not open up in the UK anytime soon, our only option is to go to the US.

If you have ever felt the warmth of a loving parent, or seen the joyful smile of innocence spread across your child’s face, then you will understand that any decent parent would move mountains for their child. If Hadi is fortunate enough to be selected for trials in the US, then nearly the medical bills will be covered by their medical research team. But if he is not selected as a primary candidate, we will have to cover the cost of everything ourselves. Not just travel and accommodation, but also medical bills.


We would be eternally grateful for any donations to help us achieve our goal to take our son to the US and get treatment for an illness that has been casting its terrible shadow over all of us for far too long. No donation is too little and no donation is too large, every pound will go towards helping Hadi take back the one thing that many of us take for granted: health.

Many thanks for reading this!

Fatma

(Hadi’s mum)



Contact details:

Local consultant: Dr Lynn Riley at Barnet Hospital

Admitted at: Great Ormond Street Hospital

Organizer

Abubakar Hatimy
Organizer
England

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