Parents of child with rare and life-shortening gene mutation hope to make memories with their son at home this Christmas

The parents of a child with a rare, life-shortening gene mutation “hope” to make memories with their son at home this Christmas by holding him in their arms and surrounding him with love and festive music.

Amardeep and Theo Morris, 39 and 38 respectively, who live in Leeds, welcomed their son, Simba, now 18 months old, into the world in June 2024, but within weeks they knew “something was not right” as he had seizures, low muscle tone and gastrointestinal issues.

By 10 weeks old, Simba was admitted to Leeds General Infirmary, severely underweight and “very floppy”, triggering months of testing where his parents “barely slept” out of worry.

At three months old, in September 2024, Simba was diagnosed with a rare SCN2A gene mutation.

According to the National Institutes of Health, this can be a leading cause of infantile seizures, autism spectrum disorder, and intellectual disability, and it can be also linked to hypotonia, movement disorders, feeding difficulties, and difficulties with vision.

Amardeep, a director of data, and Theo, a business analyst, were then constantly taking Simba into hospital due to his ongoing symptoms.

Simba’s immune system is also so compromised that even the flu could be “fatal” – in November last year, he contracted respiratory syncytial virus (RSV), leaving him dependent on oxygen full-time and doctors were unsure whether he would survive Christmas 2024.

Simba is currently living at home but is under the palliative care of Martin House Children’s Hospice, in Boston Spa, West Yorkshire, struggling to maintain oxygen levels due to severe respiratory issues and is “not very stable”, and doctors do not know if he will “survive this winter”.

Amardeep told PA Real Life: “I understand that Simba is not going to have a long life… we’re already seeing some signs of it, we’re all terrified.

“I want him to feel our love, what Christmas music we put on, the smells that we have in our house.

“I don’t think people understand that we don’t have a lifetime with our child to make organic memories, we force them.”

When Amardeep gave birth to Simba in June 2024, he was taken to the neonatal intensive care unit for resuscitation and observation.

Since birth and throughout his first weeks of life, Simba showed signs that “something was not right”, including seizures, a failure to cry at birth, low muscle tone, gastrointestinal issues and visual impairment.

At around 10 weeks old, Simba was admitted to Leeds General Infirmary as doctors said he was “severely underweight”, weighing under 2kg, and was “very floppy”.

Medical staff began carrying out countless tests, and after a month passed with no answers, a neurologist was assigned to his case.

“We found a new, relentless fight for his life,” Amardeep said.

“It was also the most traumatising time… the scariest and loneliest point of probably both of our lives.

“All three of us were robbed of what you should have when you become parents.”

Finally, after genetic testing, Simba was diagnosed with an SCN2A gene mutation at three months old in September 2024.

When receiving the diagnosis, Amardeep and Theo were told the condition could cause additional SCN2A-related disorders, including epilepsy, hypotonia and visual impairment – explaining Simba’s symptoms since birth.

“I couldn’t breathe, your heart drops,” Amardeep recalled.

“They said his epilepsy alone could be fatal… I’ve never felt so sick in my life, it was a feeling that I don’t wish on any parent or any person, and I never want to have it again.”

Theo added: “At that point, you look at your partner and your world ends for you, but it ends for them as well, so it feels like a double hit.

“I was just trying to make sure that she (Amardeep) could get through that moment, because she reacts first, I take care of her, and then I react a bit later, and she takes care of me.

“So we always find a way to balance it so that both of us don’t break at the same time.”

Due to the rarity of the condition, doctors had limited resources available – and the couple were given a pamphlet and a link to a Facebook support group.

As of 2024, 714 people in the world have been found with mutations to the SCN2A gene, according to Simons Searchlight, an online international research programme for rare genetic neurodevelopmental disorders.

The couple then told their close family members, a process they described as “so heart-breaking”.

As time went on, Simba continued to present symptoms of additional SCN2A-related disorders and was frequently admitted to hospital and closely monitored, especially because his immune system is so compromised that even the flu could be “fatal”.

Theo said: “Different symptoms show at different times and to different degrees – Simba tells you what’s going on, and we have to jump on whatever is wrong.”

Simba is supported by multiple specialist teams, including respiratory, nephrology and neurology, as well as epilepsy nurses, general paediatrics, a dietitian, and specialists at Martin House Children’s Hospice.

“We have an entire filing cabinet full of all his documents because there is so much to keep track of,” Amardeep added.

In November last year, Simba’s condition “took a turn for the worse” when he contracted RSV and was placed on oxygen full-time.

At the time, doctors were unsure whether he would survive Christmas 2024 – and as a result, Amardeep said she “cancelled Christmas”, refusing to celebrate.

However, Theo encouraged her to attend a Christmas party that year, organised by Martin House Children’s Hospice – the hospice is family-led and provides free care for children and young people with life-shortening conditions.

Amardeep said: “We had the best time ever and it really spurred us on to want to celebrate Christmas and make it the best Christmas.

“So instead of cancelling Christmas, we had the biggest celebration with our family, and now Christmas has a new meaning for us because of Martin House.”

In May 2025, Amardeep and Theo decided they wanted Simba to receive the majority of his care through Martin House.

Amardeep explained: “We decided to focus on his quality of life rather than quantity and opted out of hospital stays through the NHS.

“We still have support through the NHS and they’re amazing and Martin House has a family-centred approach so it’s the perfect buffer.”

On December 4 2025, Simba was admitted to Martin House due to respiratory issues, and an ambulance was called.

“We wouldn’t have been able to take him to A&E because he needs to always be plugged into advanced oxygen at the moment,” Amardeep explained.

“We spoke to Martin House and they said they were not going to let us make traumatic phone calls to 999 and they would take care of it, and they asked us to just pack our stuff and have a cup of tea to get ourselves together.

“We would have completely fallen apart without them – we felt like we could finally breathe again after they helped us.”

Simba is currently “not very stable” and continues to struggle to maintain his oxygen levels.

Looking ahead, Amardeep said: “We just want our son to have a happy life, however long it is.

“I would really encourage others to donate to Martin House this Christmas – they’ve changed our lives.”

To support Martin House’s Christmas appeal, visit: www.martinhouse.org.uk/ChristmasAppeal.