For the first time, Gemma said she felt understood by care professionals.
Her son Milo was two years old and had been diagnosed with metachromatic leukodystrophy (MLD), a rare genetic and degenerative brain disease.
The family – Gemma, Milo, Milo’s dad Jon and older brother Alfie – enjoyed their much-needed break. They were able to spend precious time together, relaxing, having fun, making new friends and expanding their care network.
Caring for Milo had become the family’s new normal and allowing the hospice team to pick up his care for a short time helped Gemma and Jon to really appreciate the huge pressures and challenges their family faced on a daily basis. For Alfie, staying at Charlton Farm and spending time with the sibs team gave him some important freedom from his little brother’s daily care routine.
“They made our first stay so easy. It was refreshing and opened my eyes to everything that my family do,” said Gemma.
"I instantly loved our doctor. She spoke in a way that filled my heart with warmth, and for the first time with a professional, I felt understood.
“After our first stay it was clear this was more of a space for us than Milo. Even in the early stages he was telling us that home was where his heart was.
But the staff at the hospice were amazing at listening to all our ‘little ways’ and trying to create the perfect stay for us as a family.
Visits to Charlton Farm also meant music therapy, massage treatments, family swims, trips to the zoo and Christmas dinners together …there was even a visit from Santa in a helicopter.
And when Milo’s hospital admissions became more frequent, the hospice doctor, along with the palliative team, were always there to support the family.
“Milo always struggled significantly in hospital. So when it started to become clear that his regression was taking a different direction, one where things were not improving, Charlton Farm listened carefully to our wishes,” said Gemma.
“We were fortunate that Milo had the opportunity of end-of-life at home. We had access to the 24-hour phone service, which Charlton Farm provides. We were also given two visits a week from our local respite service-Jessie May; two nights’ respite by our Lifetime nurses; as well as regular touch bases with the hospice doctors via phone or home visits.
“All three different palliative/respite teams worked together and for us it was seamless and I am eternally grateful that this was a choice for us.
"Our hospice doctors were by our-side every step of the way.
But when Milo then declined all home interventions and his body said no more, Charlton Farm took us in and the staff were happy to be led by us, so that Milos creature comforts were met.
Milo died at Charlton Farm in April this year, aged 6.
“I am still dealing with the process we went through with Milo, that doesn’t change just because you are at home/hospice. Both Jessie May and Charlton Farm are helping us get through this time. They are like family. They saw Milo beyond a patient and saw him for the wonderful little boy he is. And THAT, is everything.”