Parents' daily battle for little girl with rare life-limiting condition

Anya Behl has a one-in-a-million condition that causes life-threatening seizures and paralysis.

The parents of a little girl with an ultra-rare condition have opened up on their everyday battle to keep her out of hospital.

Five-year-old Anya Behl has a one-in-a-million condition called alternating hemiplegia of childhood (AHC), a neurological complication which can cause numbness or full loss of feeling and movement. 

AHC can result in paralysis and muscle rigidity on either side of the whole body, which can last for up to weeks at a time. 

Many things can trigger it – from heat and dehydration to pain and lack of sustenance. 

AHC can also bring about life-threatening events where her neurological system shuts down and she stops breathing, resulting in her needing ventilated in ITU – which has happened six times in her young life so far.

Parents Katherine and Abhishek Behl are “constantly modifying the environment” to prevent Anya suffering life-threatening symptoms.

Anya with her brother *

Katherine told STV News: “They say the only predictability about this condition is that it is unpredictable. 

“Lots of different things can trigger symptoms – going outside on a cold day or bright lights can leave her paralysed or suffering painful seizures. Anything that puts a strain on her energy-wise.

“We never take it for granted. We’ve got through the day a couple of times and she’s ended up in ITU in the evening.

“It can be relentless, even on good days, you don’t know if you’re going to have a full good day.

“It can catch you off guard. You just never knows what’s going to happen each day.”

Abhishek added: “Even going from a hot bath to room temperature can trigger her, so we have to balance that temperature control.

“Any signs of symptoms, we give her medicine within a few minutes.

“We have to treat things quite quickly but sometimes we can’t stop it. Within 15 minutes it can leave her half-paralysed for a week.

“We have to watch her like a hawk for subtle symptoms she might have. It never stops.”

Katherine and Abhishek have to juggle caring for Anya round-the-clock along with her 16-month-old brother Neil – and the stress and fatigue can take its toll.

Local charity Children’s Hospices Across Scotland (CHAS) has been supporting the Behl family since 2019 and have provided them a “lifeline”.

Nurses and care assistants regularly visit the family at home to help ease their stress and allow them much-needed rest.

The couple ended up sick in hospital due to exhaustion and the team took Anya to the children’s hospice for five days.

They even made a last-minute visit to help Anya’s grandparents while they were at the maternity unit delivering her little brother.

“They have become our family,” Abishek said.

“They’ve seen us through many different challenges, they look out for the hurdles that many families go through. They’ve done a lot.”

Anya has life-limiting condition alternating hemiplegia of childhood (AHC)

Katherine added: “It can be hard if she’s fully paralysed to lift her or keep on top of all her medicines.

“They also take Anya to the park, which is hard for us to do without extra support. It means you can switch off.

“We know when we end up in crisis, CHAS are there to support.

“They take the pressure off and help you have that family time – they let you be mum and dad.”

Children’s Hospices Across Scotland (CHAS) is urging parents who have life-limiting conditions to reach out for help if they feel they need support.  

CEO Rami Okasha said: “Knowing that your child is going to die is the hardest thing. We see parents who are physically and emotionally exhausted.

“What keeps them going is knowing there is someone coming in to help them out and give them a hand around their own house and make sure they get a break.

“It’s really important that person is a trained professional, someone like a nurse who can provide the level of care that many of these every complex children need.”

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