Lylah Blakeman, a young girl from Stafford, has been struggling with several health conditions since the day she was born. She suffered a stroke followed by a haemorrhage whilst she was still in her mother’s womb and now she has been diagnosed with severe brain damage, 13 diagnoses, four types of epilepsy, visual impairment and cerebral palsy.
The Donna Louise Children’s Hospice is a registered charity based in Trentham, and has been supporting the Blakeman’s since Lyla was 9-months-old. Lyla’s mum Meghan has spoken about her daily struggle with Lyla and what the hospice has done for her.
Meghan said: “From 18 weeks gestation, it was a very uncertain and stressful time for us as a family. It was difficult to feel relief when Lyla was born as we were told that her ‘journey’ had only just begun. It was tough knowing that Lyla wouldn’t reach the usual milestones that other children would.
“We would wait in silent anticipation for the first word, first foods, first steps – hoping that the doctors were wrong and that one day she would be able to do these things, but sadly she can’t and she will never be able to walk, talk or eat due to the extent of the brain damage.
“A typical day for me is pure chaos, not just because I have three young children, one with special needs, a shift-working husband and no family support. Just getting out of the house is a mammoth task because Lyla has so much equipment which she needs daily.
“I also suffer from depression and anxiety, especially coping with the constant changes and fighting for Lyla’s needs – it’s just exhausting.
She continues: “I was broken; Lyla was very ill, and the Donna Louise Children’s Hospice came into our lives, just at the right time. My children call the hospice the ‘fun house’ and the care staff ‘angels’. The hospice means the absolute world to us as a family. They provide the services to keep us afloat, we would be lost without them. They saved us, they literally picked up the pieces of our broken family and now we have a strong support system and a very strong family unit, thanks to all the work the Hospice does.
“I realise that one day we may need the hospice in the traditional sense – at the end of Lyla’s life, however, in the meantime, we are making every moment count.”
The charity takes its name from a young local girl, Donna Louise Hackney, who died from a life-limiting condition at 16-years-old. Her family wanted to help children and other families in a similar situation and so in 1999 the Donna Louise Children’s Hospice was set up and fundraising began. In 2002 a community nursing team was established to give care and support for children and their families in their own homes. The following year, the fully equipped building opened its doors to offer Paediatric Palliative Care and support for children and young persons and their families across Staffordshire and Cheshire.
The hospice has 8 bedrooms and helped a total of 220 families last year, but, to continue to provide this care and support, they rely on volunteers and donations from the public.
Jayne Dono, Donna Louise Children’s Hospice Communications Manager said: “The public are wonderful. We are a local charity and the amount of support we receive is amazing.”
The charity also has celebrity backing in the form of Stoke-on-Trent born superstar, Robbie Williams, who is a patron for the children’s hospice. In a statement, Robbie said: “It’s a privilege for me to be a patron of The Donna Louise Children’s Hospice. It makes a real difference to these children whose lives have been tragically limited and I will continue to lend my support.”
Other Stoke-on-Trent stars such as Jonathan Wilkes, Nick Hancock and Phil ‘The Power’ Taylor also support the charity along with other celebrities such as Jo Brand, Rory Delap, Rachel Shenton, Adam Peaty MBE and Sir Lee Pearson CBE. There is also a mass of support with fundraising, from local businesses’ such as Vodafone and Bet365.
Jayne explains, “We offer short breaks for the families, one family comes here four times a year and see it as a holiday. We offer emotional support in the form of counselling, the art therapy and music therapy classes are really effective for helping younger children to understand their feelings.”
Meghan’s two sons Connor, 9, and Jamie, 7, love the art therapy sessions. The sessions help them to talk about their feelings and they also attend the siblings group which they love.
Jayne said: “This job is really rewarding. After coming from a corporate background it’s great to be doing something that matters. I feel I am making a difference to people’s lives. We all feel that way. It’s worthwhile seeing the effect we have on people’s lives. The children enjoy being here so that makes it a happy place.”
For more information, or if you wish to donate to The Donna Louise Children’s Hospice, visit their website at www.donnalouisetrust.org.
Publishers of Staffordshire Living Magazine