Wish stories

As a child, Sumaiya was a very active, happy child but was constantly falling over, which doctors attributed to different reasons during her childhood, from ADHD, to dyspraxia to flat feet. However, it became harder to ignore once she reached secondary school.

“Her legs started coming inward,” explained her auntie, Ghazala. “Over time, Sumaiya was finding it difficult to walk and eventually, she just stopped walking. We weren’t getting any answers, so her parents took her to Pakistan for a brain scan, which showed that she had too much iron on the brain. We showed the results to the GP who referred us to the child development team and subsequently to Great Ormond Street Hospital.”

It turns out that Sumaiya has Pantothenate kinase-associated neurodegeneration (PKAN), a rare, inherited, and fatal neurodegenerative disorder caused by PANK2 gene mutations, leading to iron accumulation in the brain. As a result, the signals in her brain don’t communicate correctly with her body. Unfortunately, Sumaiya’s condition began to deteriorate.

“She stopped talking and eating,” said auntie. “She had a wheelchair and had to go to a special needs school. Her condition worsened and her head was falling to one side, making it unsafe for her to go on the bus anymore. Sumaiya gets very dystonic, making her muscles stiffen up, so she’s constantly contracting. She was given Botox to help relieve the symptoms, but it affects her whole body, so different areas are treated at various times. She had major surgery recently to get a DBS stimulator fitted, which sends signals to keep her calm. She’s on a lot of medication and she has five patches on her body, which we change every week, and is fed through a peg tube in her stomach.”

Initially, Sumaiya struggled with the sudden changes happening to her body and environment.

“When she had to leave her mainstream school and go to a special needs school, she saw the conditions of the other children and kept saying ‘I don’t want to go to that school!’. But she gradually made friends.” recalled Ghazala.

However, managing her condition has gotten easier for Sumaiya as she is surrounded by support from her family, her social worker, her medical team and her occupational therapist, who all have her wellbeing at heart.

The family found out about Make-A-Wish through a nurse at her school, called Shakira, during a discussion about what Sumaiya might like for an Eid present. After deliberating over what might work best for Sumaiya, the family thought she’d enjoy a big party for her 16th birthday, surrounded by her nearest and dearest.

Sumaiya was extremely excited in the lead-up to her wish, with her outfit being her first priority!

“She said that we can’t wear pink because she’s wearing pink,” laughed auntie. “The theme is a winter ball, giving us all an opportunity to really dress up.”

On the morning of the wish, it was all hands-on deck, along with two Make-A-Wish volunteers, helping to set up for a guestlist of 55 people! During the day, the kids enjoyed candyfloss and popcorn and were mesmerised by the party entertainers' tricks.

“It was an amazing day. We ate lots of food, danced and a face painter came for the children. It came together so nicely. Sumaiya’s favourite part of the day was running into the room with her sister – well, her sister ran in, pushing her in her wheelchair! She had a massive smile on her face,” said Ghazala.

Even though the day sadly had to end, packing away didn’t feel like a chore as everyone worked together to clear the room, leaving the family with memories to last a lifetime.

Most importantly, the party gave Sumaiya the precious opportunity to celebrate her special day with all of her loved ones present, especially her best friend, who she no longer gets to see often, as she doesn’t go to school anymore.