Help Save Hadi

£16,397 of £540k goal

Raised by 357 people in 1 month
Hi all,

Thank you for visiting my GoFundMe page.

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
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Update 6
Posted by Abdura Hadi
2 days ago
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Dear all,

We hope you are having a great Friday and looking forward to a great weekend. Hadi was discharged from Barnet Hospital after completing his antibiotic course. He had an infection in the line.

We had a meeting today with his haematologist at Great Ormond Street Hospital. To be honest there is not much new information that way as it still a waiting game. The Inotuzamab has done it's job. When they do a cell count they find that the leukaemia cells are only one in 100,000 cells which is at the limit of detectability which is good news but it is expected that the proportion of Leukaemia cells could go up. The Inotuzamab is not a cure within itself so now it is a waiting game.

So far Hadi is looking healthy; all of the nurses, doctors and other staff at the hospital are happy to see him energetic and glowing. As you can see from the image nurse Super Ray was excited to take a picture with Hadi!

We would also like to thank all of the families of Garden Suburb Primary School for their generous donations and help. It's all still overwhelming and we feel like we can never thank you enough.

To all of you with your unwavering support and generosity, we look forward to updating you all soon with news about his new lymphocyte count which we expect next week.

#helpsavehadi
Hadi and Super Ray
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Update 5
Posted by Abdura Hadi
13 days ago
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We apologise for the delay and being late in updating you all. It’s been quite an eventful couple of weeks. So on Friday 7th April, we had a meeting with Dr Sujith who is Hadi’s consultant at Great Ormond Street Hospital. At the meeting, we also had the pleasure of having the presence of Dr Lynne Riley, his local consultant, who graciously attended even though it was her day off. If you remember the medical team wanted a second bone marrow sample to assess the progress of the current medicine that Hadi was on. We were not sure why they wanted a second bone marrow sample. However, it was because they wanted to confirm a result.

Inotuzamab is an experimental drug that Hadi is being treated with. Inotuzamab is one of the last few hopes that we have against Hadi’s leukaemia. What they found from his bone marrow sample was that the inotuzamab has been working thankfully and has removed all the cancer cells and the healthy cells from his bone marrow. However, that is what the medical team were hoping for and kind of expecting.

Before Hadi was given inotuzamab treatment, the vast majority of Hadi’s blood cells were cancer cells. Now they have taken Hadi off the inotuzamab, they will be monitoring his white blood cells in his bone marrow. We hope to see that once the number of white blood cells goes up again, the vast majority to be healthy instead of being cancer cells. He will have a lumbar puncture on a monthly basis so that they can monitor him. A lumbar puncture is a procedure where a needle is carefully inserted into the lower spine to monitor blood cell count and spinal fluid.

Hadi needs his white blood cell count to go up for CAR T cell treatment. As they need to collect a lot of healthy white blood cells from his body to turn them into CAR T cells. The CAR T Cells will be put back in his body to fight the cancer cells. Even though it was very good news for Hadi, the medical team are insistent on stating this is not the cure and that this is just one stage to overcome in the process where they need to keep him going until the CAR T-cell treatment is available. Whether in the UK or in the US. It is still a long way to go and an arduous journey for everyone.

Since our meeting with the medical team at Great Ormond street, he is still being monitored constantly. His haemoglobin levels and platelet count are not dropping as quick as they used to which is good news. He is neutropenic which means that Hadi was very susceptible to infections. He has to receive antibiotics multiple times a week: AmBisome which is an antifungal; penicillin which is antibacterial; and tazocin which is antiviral.

The little soldier is currently fighting off a cold and so Barnet Hospital have asked to have him admitted to ensure that they can monitor him to ensure the symptoms he is exhibiting are due to the cold and not due to anything else more hazardous. Unfortunately, simple little illnesses that are an inconvenience for us cannot be taken lightly when it comes to Hadi.

Again thank you all so much for your support. We must keep fighting to raise awareness for Hadi. As always, we will keep you updated as more info comes.

Abdurzak (Hadi's dad)
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Update 4
Posted by Abdura Hadi
24 days ago
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Dear all,

We have had an informative meeting with Dr Lynn Riley at Barnet Hospital. Tomorrow we will have another meeting at Great Ormond Street Hospital, where we should have a better idea of what is going on. Please stay tuned for the update elaborating. *sigh* The thing is Hadi was not even scheduled to come to the hospital today and was promised a day off. However, he had to come in for a blood transfusion as his Haemoglobin was low and his platelet count was also low. The little soldier is not enthusiastic about being in the hospital today when he thought he'd be seeing his mates.

We can not thank you enough for the amount of generosity we have been shown. In regards to your donations and not just monetary but time and energy. However, we have an urgent request. To take Hadi's campaign to the next level of awareness we need to try to go viral. We need to target a select few high profile individuals to get much needed exposure.

The strategy is to bombard 1-3 high profile individuals until we can force their hand to retweet. Once we have forced their arms we can move on to others. If possible could you copy and paste the tweets below. And if you don't have twitter please open an account. It won't take long. One person doing it one off would not work. However, if multiple people do it and bombard over several days we are bound to get a response. All of the tweets below fit within the character limit and the URL doesn't count towards the character limit. For now Gary Neville, Rio Ferdinand and Gary Lineker have been chosen to spread awareness.

Please share these instructions far and wide as well.

@GNev2 #HelpSaveHadi by sharing his page. He's been fighting leukaemia for 6 years now & needs treatment in the USA

https://www.gofundme.com/helphadi&rcid=cf85dfeee9794874b9294d98f1fb148e


@GaryLineker #HelpSaveHadi by sharing. He’s been fighting leukaemia for 6 years now & needs treatment in the USA

https://www.gofundme.com/helphadi&rcid=cf85dfeee9794874b9294d98f1fb148e

@rioferdy5 #HelpSaveHadi by sharing. He’s been fighting leukaemia for 6 years now & needs treatment in the USA

https://www.gofundme.com/helphadi&rcid=cf85dfeee9794874b9294d98f1fb148e
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Update 3
Posted by Abdura Hadi
26 days ago
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Dear all,

A small update. We said we would inform you of the outcome of the bone marrow aspirate but Great Ormond Street Hospital have asked for another bone marrow aspirate sample. Why? We are not sure at the moment. It seems like they didn't find what they were looking for from the first bone marrow aspirate. As soon as we do know you will be updated.

Some good news in the mean time. Some time between now and the last update we've crossed another milestone of £10,000. In fact, we are closer to £15,000.

Please continue to share and and donate as much as you can. We still have a long way to go but we would not have made this far without your generous and continuous support.

Regards,

Hadi's dad

#helphadi #gosh
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£16,397 of £540k goal

Raised by 357 people in 1 month
Created March 22, 2017
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Thinking of you Hadi, sending our love - the Landeck family

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