Fundraisers thanked for girl's stem cell support

A mum whose daughter has received private stem cell treatment has thanked fundraisers for donations.

Margo, who is the eldest of triplets, suffered a brain injury at birth which left her with seizures and dystonia - uncontrolled and sometimes painful muscle movements.

The first round of private treatment, which is not offered in Guernsey, or by the UK's NHS, took place in Switzerland in April. About £44,000 has so far been raised.

Naomi said the community raised funds through sponsored walks, raffle tickets, collection buckets, and a fundraising page, and they had been instrumental.

Naomi said: "It has all been community... we had that money to securely book Switzerland."

Since the treatment, Margo has received intense physiotherapy, and Naomi believes she has seen changes in her already.

"Margo's reactive a lot more, she's smiling a lot more, she's looking at me - she's laughing."

Naomi said she hoped to give Margo another five private stem cell treatments, and with money raised by community efforts, the second one, in Paris, was already booked.

"We can now afford Paris, and that will include flights and accommodation, which is amazing.

"I don't feel like we're alone and it's as cliche as it sounds, it's like a big family, a community."

Despite community support, Naomi said she had called for changes to Guernsey's respite framework following difficulties in accessing care for Margo.

She said the original carers allocated to her by Children and Family Community Services were re-directed as they "were needed elsewhere".

She said the Croft - a respite service run by Guernsey's Childhood Development Service - did not take children under five and Naomi added she had been left without options.

She said Guernsey's social services system needed to improve and become more "adaptive" to support families like hers.

"There will be more Margos, and there will be more families," she said.

"Don't just look at a policy and go, OK, that's what it is. Actually, no, you need to look at it more and look at the people."

Dermot Mullin, director of Operations for Health & Social Care, said the service had been in touch with the family and "are actively trying to find alternative arrangements".

Mullin said: "We acknowledge the impact that the loss of respite support can have on the wellbeing of the child, parents, siblings, and the wider family.

"While Children and Family Community Services have continued to actively recruit respite carers and expand where possible short-break provision for children with additional needs, demand is often higher than the supply of carers we have available."

He added the shortage was reflective of wider funding and resource challenges faced by Guernsey's health and social care system, but the department "remained committed" to improving respite capacity for children with additional needs on the island.

Since being contacted by the BBC, Naomi said she had been offered a respite carer who was available every second week, and a place in a nursery for Margo two mornings a week.

"It all feels a bit bitter sweet to be honest... yes having a break to have a coffee would be lovely, but I've been doing this for almost three years now, and I've been shouting from the rooftops about the lack of support," she said.

She said while her and Margo have "thankfully been OK" other families in similar situations might not be able to hold out.

"It's about a lot more than respite - it's their attitude towards it... if somebody was in crisis where do they turn to?"

The BBC put Naomi's comments to the government department, but it declined to comment further.

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