Dzemil

Dzemil (Jamil) was diagnosed with ATRT in December 2023. 

Unfortunately, this did not come as a huge shock as sadly his family was aware from a very young age that Dzemil has the SMARCB1 gene, which is connected to this type of cancer.

Dzemil suffered two cardiac arrests and meningitis when he was a baby, which nearly took his life. Consultants at our local children’s hospital believed Dzemil had a genetic condition and that we should proceed with genetic testing. The results showed that Dzemil has 22q11.2 Distal Deletion Syndrome along with the SMARCB1 gene, which meant that there was a risk of ATRT. Therefore, Dzemil was monitored every 3-6 months via MRI and ultrasound scans. During a planned MRI at the end of November 2023, a tumour was found. This grew rapidly within a two week period, but thankfully, after a successful nine hour operation at Alder Hey Children's Hospital in Liverpool, England, the surgeons managed to remove all of the tumour.

In April 2024, Dzemil finished 30 sessions of Proton Beam Therapy at The Christie in Manchester, England. He has 5 rounds of chemotherapy left, making 12 rounds in total.

His family shares that this treatment is a lot, but he is a fighter and continues to smile each day, and we could not be any prouder of him.

October 6, 2024 Update: 

Dzemil's 3rd Birthday & NED Status

Dzemil finished his EU-Rhab protocol in July 2024 and last MRI in August showed some post radiation changes and a cyst but thankfully NED. His next scans are in November and we are praying for the same results.

October 6, 2025 Update: 

15 Months Stable and Living Life to the Fullest

We are thrilled to report that Dzemil’s scan in August showed No Evidence of Disease (NED), with the same post-radiation changes noted on previous scans. This means Dzemil is currently 15 months stable! His family never thought they would reach this point and counts their blessings every day that they still have him here.

Dzemil started pre-school in January (in England, children typically begin nursery in primary school when they are three years old). He is thriving in a special needs class that he loves and has a one-to-one helper whom he is very close to.

Although Dzemil is still unable to speak and continues to receive speech and language therapy, he communicates in his own unique way. He struggles with his legs but has a new wheelchair that helps give him a rest when needed. His family is grateful that he is still here, knowing just how aggressive ATRT is. They continue to hope for NED in his next scans, scheduled for December.

Dzemil continues to love Spidey and His Amazing Friends, as well as Marvel action figures. He recently had a blast meeting Spider-Man at Disneyland Paris! While food can be hit or miss, Dzemil will never turn away a Domino's pizza. Dzemil is never seen without a smile and truly lives life to the fullest.

Dzemil was recently granted a Make-A-Wish trip! His family is heading to Center Parcs in England for a week, arriving just in time for his birthday on October 6th. For the family, creating these precious memories is everything, and they never take a single moment for granted.