Local mum, Jenny Best, from Banbury, is asking people to donate to Helen & Douglas House Mother’s Day appeal to help local families like hers who have children like Nathan, with life shortening conditions.
Mother’s Day is a special day for all mums to make precious memories to treasure forever but particularly for mums like Jenny.
Nathan, aged 10, was born with Prader Willi syndrome, a rare genetic life-limiting condition which causes a range of symptoms and he has been coming to Helen & Douglas House for nine years. Nathan has low muscle tone and balance issues which means he often needs his frame to walk, or a wheelchair on bad days and he is also fed through a tube.
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During his first year, it was easier for mum Jenny to cope with his complex needs. But, as he got older, and his physical symptoms increased, a local nurse could see signs that Jenny was starting to struggle as his primary carer. And, as a mother with three other children to look after, she was heading towards exhaustion. This is when she was referred to Helen & Douglas House Children’s Hospice.
Support from Helen & Douglas House helped the Best family get through a scary tough experience with Covid-19.
Jenny said: "Despite Covid-19, they have stayed open, with new safety measures in place. They have adapted by increasing their outreach services so they can continue to support the children that are too vulnerable to leave home. This means that we know help will be available if, and when, we might need it, which is so vital for us.
"This last year has been difficult for many of us in different ways. We have faced our own struggles, including suffering from Covid-19 as a family. Having this illness was incredibly scary with a vulnerable child such as Nathan. Thankfully we got through it, with help and support from Helen & Douglas House.
"Asking for help is difficult, but very rewarding and has helped to change my family’s life for the better.
"I am in awe of the nurses and doctors at the hospice who have been working so hard. They have helped ease the pressure on the NHS during the pandemic by caring for twice as many children who needed end-of-life care compared to the year before."
For the Best family Helen & Douglas House has also become one of Nathan's favourite places to go.
Jenny added: "Nathan’s tells me that Helen & Douglas House is his favourite place in the world. Aside from the exceptional one-to-one care they give him, he is often found singing, taking part in craft sessions, kicking about a football in the garden and even baking, which is made possible by the specialist facilities they have for disabled children.
"Thanks to the support from Helen & Douglas House he is often seen at the hospice with a huge smile plastered across his face and is very reluctant to come home.
"Realising that we needed support from a hospice was very difficult for me. I am protective of my children and am very independent and I always thought that a hospice was just for end-of-life care.
"But, as soon as we arrived, I was immediately reassured that Nathan could get the respite care he needed, in a safe and comforting environment. It also meant that I could get the chance to just be his mummy again.
"Donations from supporters help to provide medical care and regular supportive stays for Nathan, where he visits the hospice for a couple of days and nights and is looked after by their specialist care team.
"This, in turn, has taught me to trust others to care for him and has given me the chance to spend precious time with my other children and Nathan’s dad, Stuart.
"Helen & Douglas House only exists because it receives donations from the general public, with 83 per cent of the £3.4m donated every year by supporters.
‘We are so grateful to everyone at the hospice."
Emma Murphy from Helen & Douglas House said: "We would like to say a huge thank you to everyone who has donated to our Mother’s Day Appeal. Without this wonderful generosity we would not be there to help families like Jenny’s.
"You can help to make sure that this Mother’s Day, and the days beyond, will be filled with precious memories for the children and families we support with a donation to our Mother’s Day appeal.
"You can donate by going to www.helenanddouglas.org.uk/jenny or calling 01865 799 150. Your donation will mean so much to Jenny and Nathan and all the other families who rely on care from Helen & Douglas House."