Express & Star

Care at Christmas: 'I didn't believe there were people that could help, until Acorns Hospice lifted me up from rock bottom'

A mother-of-two has celebrated the care provided by a Black Country children's hospice after it helped lift her from 'rock bottom'.

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Alex Barklam was born a cheeky and affectionate boy who would go on to live all things frogs.

But mum Sam's life was turned upside down when she received the heartbreaking news that baby Alex was born with the rare genetic disorder Smith-Lemli-Opitz Syndrome.

The diagnosis came at a time when Sam was already dealing with the devastating death of her own mother and the end of her marriage.

Alex Barklam was diagnosed with the rare disorder Smith Lemli Opitz Syndrome
Alex Barklam was diagnosed with the rare disorder Smith Lemli Opitz Syndrome

Talking about the diagnosis, Sam, from Dudley, said: "I’ll never forget that first visit from Acorns, it was just like an angel was coming to help me.

"I was just so frightened. Those first 12 months were the worst in my entire life. I found it really, really hard. I don't know how I made it through.

"During the pregnancy, there was absolutely nothing to indicate there was going to be any problems with Alex.

"I was told I'd got a perfectly healthy baby, and we were discharged, but my cousin came to visit and she immediately said 'pack your bags and go back to hospital'. Then, with all the tests he had, it was like opening a can of worms."

After they returned to the hospital, baby Alex was eventually diagnosed with Smith-Lemli-Opitz Syndrome, a rare genetic condition affecting multiple body systems. 

The severity of symptoms varies between individuals, but some are born with organ problems and most have intellectual and behavioural difficulties. 

Sam said: "I found it really, really hard. I was just so scared that the worst was going to happen. I don’t know how I got through it. It was a traumatic experience.

"I think it was when Alex was one year old, when a community nurse came around to help me and just took one look and thought 'this woman seriously needs some help'. That’s when she recommended Acorns and then the journey with them began.

“I didn’t believe that there were actually people out there that could help me, and I didn’t know how much longer I would have been able to live like that."

Sam, who was also looking after her young daughter Elisabeth, says she was 'literally exhausted', and that the Acorns staff were 'like angels'.

She said: "I’ll never ever forget that first visit from Acorns when nurse Ruth came to see me. It was the first time I felt like someone understood how difficult it was, and how exhausted you could be. It was just like an angel was coming to help me.

"I remember it gave me the first opportunity just to have a break, and for half an hour I sat on the bed in silence and looked out the window. I just needed to breathe.

"I genuinely say that I don’t know what I’d have done without Acorns, or where I’d be right now. They literally lifted me up from rock bottom."

Acorns' hospice in Walsall
Acorns' hospice in Walsall

While Alex's future is uncertain, Sam is determined to make every moment count with her family, saying that the Acorns staff help her enjoy every day. 

She said: "Realistically, none of us are guaranteed any length of time in life. And for me, with Alex and Elisabeth, we just make the most of every single day. We have so much fun together doing different things.

Alex Barklam, mum Samantha and sister Elisabeth
Alex Barklam, mum Samantha and sister Elisabeth

"Acorns has helped me emotionally, physically and mentally, in all aspects really. They’ve got a real care element and I always feel like they’re there to listen if you’ve got problems.

"I think Acorns were really the first people to be on my level of understanding on what I was going through. 

"They got involved when I was at my absolute lowest and was physically and mentally exhausted. They just scooped me up and helped get me back on the straight and narrow. They are brilliant."

Acorns needs around £35,000 each day to provide its children's hospice care, with two-thirds of that amount coming from generous donations and fundraising by the local community.

The Express & Star has launched its Care at Christmas appeal in support of the trust. Donate to give the gift of Acorns vital care and support to ensure no family caring for a seriously ill child in the region is facing faces a difficult journey alone.

Donate to Acorns here: acorns.org.uk/Star-Appeal