Mekaal and Jibreel’s story

“I am not sure how we would cope if Alexander Devine didn’t exist. I know that some of the tough days would have been even tougher.”

Habiba Ali, mum of Mekaal and Jibreel

The Ali family never imagined they would need a children’s hospice service like Alexander Devine.

Asif, Habiba, and their two sons, Meekal and Jibreel, were a tight-knit family. Growing up in Slough, the brothers enjoyed playing pretend school games and filming funny videos together. They also loved playing football with their dad, Asif, who coached their teams on weekends.

Their lives were filled with love, joy, and laughter. However, in April 2021, tragically their life changed.

This is their story…

Jibreel and Mekaal’s story

Doctors had to tell Asif and Habiba the devastating and completely unexpected news that both their boys had a rare and deadly genetic condition called Adrenoleukodystrophy. This incurable condition causes irreversible damage to the brain with progressive loss of physical and cognitive skills.

Soon after diagnosis, doctors advised that whilst there sadly was no treatment for Mekaal due to the progression of his condition, his younger brother Jibreel could undergo a stem-cell transplant at Great Ormond Street. It was a high-risk treatment that would attempt to slow down his symptoms.

Jibreel went into hospital in June 2021 with his mum Habiba, whilst Asif stayed with Mekaal in the family home in Slough. When the boys said goodbye to each other this was to be the last time the boys were able to speak to each other.

Whilst Jibreel was undergoing treatment, Mekaal’s condition deteriorated quickly. He lost the ability to speak, walk and swallow. Our Alexander’s Care team stepped in to support Asif in caring for Mekaal and avoid hospital admission, helping with inserting a feeding tube and teaching Asif to give Mekaal the vital nutrition he needed.

Jibreel finally came home in August 2021 but the treatment sadly had not worked. The worst had happened and in fact it led to a shocking rate of decline in Jibreel’s symptoms. He lost his sight, ability to eat, walk and talk.

Just four months after their shock diagnosis, both boys needed round-the-clock care.

In October 2022, 18 months after diagnosis, Jibreel sadly passed away. Our Alexander’s Nurses enabled Mekaal to spend his final hours with his younger brother and we continue to support Asif and Habiba as they navigate such a devastating loss.

Alexander’s Nurses and Carers are there for the Ali family, wherever and whenever they have needed it.

Alexander’s Clinical Nurse Specialist, Tamara Cowell, talks about the vital support Alexander Devine provides to the family and what it means to be there for families like the Ali’s:

We are always at the end of the phone when they need us for support with pain relief, symptom management or just someone to listen to or a shoulder to cry on.

 

We know that our visits to their home give Asif and Habiba a much-needed break from the exhausting 24 hours a day routine of caring for their sons.   Our hospice also gives them a special place they could bring their boys to spend precious time together,  have fun and create treasured memories. The boys’ beautiful beaming smiles always so joyous to behold and the bond between the brothers was just so special, even though they could not communicate verbally, they were always such a calming presence to each other especially if one was in pain or upset.

 

I am proud that our Alexander’s Nurses enabled Mekaal to spend time in hospital with his younger brother Jibreel in his final hours and  to continue to provide vital support for Asif and Habiba as they navigate such a devastating loss. After Jibreel died, our play specialists have helped Mekaal create a scrapbook of treasured memories of his funny and cheeky little brother.

 

Asif and Habiba talk about Alexander Devine being a second home and that the team are an extended family to them. We utterly feel the same. Jibreel will always have a very special place in our hearts and being able to provide his older brother Mekaal, and parents with the support they need is humbling and such an honour.  

 

The bravery of Asif and Habiba in sharing their story is extraordinary. No parent should have to go through what they are going through alone. I could not bear to think what it would be like for them if our charity did not exist and we could not be there beside them.

 

I know that the valuable work that I and my colleagues do at Alexander Devine would not be possible without the generosity of others. Every day I spend with families like Mekaal’s and Jibreel’s makes me so incredibly grateful for this kindness. 

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Please help us be there

The specialist care and support we provide to families like Mekaal and Jibreel’s is free of charge but it currently costs our charity over £2.8million each year just to maintain our current level of care.

Our charity receives minimal statutory funding and is nearly entirely reliant on donations, fundraising and gifts in Wills to fund our vital service. In fact, 50 minutes of every hour of specialist care and support we provide to each child and their family is funded by the kindness and generosity of our supporters.

Help us continue to be there for families like these and reach out to even more that need us: www.alexanderdevine.org/give