Mother and daughter prepare for fundraising trek to Machu Picchu

A mother and daughter from west Wales will trek the Peruvian jungle to Machu Picchu to raise funds for a children’s charity in memory of their son and grandson.

Sian Milligan, 44, who will be heading for Machu Picchu with her mum Sylvia Wallace next year, has the additional challenge of needing to wear specialist splints just to be able to walk any distance comfortably.

Meanwhile Sylvia will be a cool 71 when she first sets foot in the Peruvian jungle.

The mother and daughter from Carmarthen are undertaking the marathon challenge with Tŷ Hafan in honour of Aled, who was just two and a half years old when he died on 13 April 2009.

Diagnosed with Downs Syndrome and multiple holes in his heart before birth, Aled fought to walk, communicate in sign language and make the most of every moment of his short life.

“Weirdly my first child, Kyle, was born poorly too,” says Sian. “Kyle had intestinal malrotation and for a while he developed phobia of food. Then he fractured his femur. The week Kyle came out of his cast, I found out that Aled was unwell.

“Downs didn’t bother me, but it was the medical conditions that bothered Aled.”

After being only the second child ever to be home ventilated in Carmarthenshire, Aled and dad Julian, big brother Kyle, along with mum Sian took up the offer of support from Tŷ Hafan Children’s Hospice.

“I’m so excited to be taking part in this epic 11-day challenge to Machu Picchu to raise fund for Tŷ Hafan,” Sian explained.

“Tŷ Hafan were wonderful with our Aled, he had such wonderful times there. He loved the sensory room, the rocking chair and the music room. The hospice was a place where I could stay and just be his mum, not his nurse. I could have a break and he was so well looked after.”

Sian continued: “Staying at Tŷ Hafan with Aled meant I could just be his mum. It meant I could step back from a lot of the negatives. Aled hated his tracheotomy. And at Tŷ Hafan I didn’t have to be that nasty person who looked after his trache for him. I could just be there to make him happy. It was absolutely lovely.

“Kyle also loved visiting Tŷ Hafan and he was spoilt too. Kyle was just four when we lost our Aled and Tŷ Hafan was fundamental in our healing process.

“They were extremely supportive and the support they showed Kyle was exceptional, supporting him to understand and grieve.

“My daughter Rhiannon was born 3 months to the day after Aled died. She’s now 16.

“Both Kyle, who is now 21, and Rhiannon have enjoyed the Tŷ Hafan sibling get togethers through the years. The services they hold in Tŷ Hafan are also a way that helps us all with our grief.”

‘Complete shock’

Sian, a community care worker, was just 22 when Aled was born, a baby brother for the then two-year-old Kyle.

“I was 32 weeks pregnant with Aled when I found out he had Downs. Two weeks later they told us he had two holes in his heart and a diaphragmatic hernia.

“Aled fought so hard to enjoy his life. He was very cheeky. Exceedingly cheeky. And he was naughty – he knew if he pulled out his trache tube then the alarms would go off and I’d come running!

“And if he didn’t like you he wouldn’t look at you, make this Donald Duck noise. He was into everything and he wanted to experience everything. He was walking with a walker before he died.

“He’d done so well. I can remember being in complete shock. He’d been through so much and fought so much to enjoy life. I thought to myself: ‘He can’t go backwards now.’ But then I thought how hard it was just for him to breathe.

“In the end it was a simple virus that destroyed him and there was nothing they could do. I was lucky I had Aled for the time that I had him.”

‘Last big walk’

Sian, who has been diagnosed with Functional Neurological Disorder, now has to wear splints on her ankles to enable her to walk any distance. But undeterred she is regularly walking 8 to 9 miles after work three or four times a week.

“We all love to be in the outdoors and I don’t know what the future holds for me,” she says. “So I’m trying to keep my legs in as good a condition as possible. It was Kyle who said he’d get me up Machu Picchu as a goal for me to aim for.

“Then I saw Tŷ Hafan was running the Machu Picchu fundraising trek and that was it.

“Sylvia will be 71 when she does the Machu Picchu walk with me,” says Sian. “She’s got a little camper van and she goes and walks all the time. Machu Picchu will be the last big walk she will do.

“We can’t train for the altitude so it’s all about the stamina for us now. But in my view, walking up Machu Picchu is nothing to what both my boys went through.”

James Davies-Hale, Head of Fundraising for Tŷ Hafan says: “When a child’s life will be short, no family should have to live it on their own and we are so grateful to Sian and Sylvia for signing up to do our Machu Picchu Trek and sharing their story as to why they’re taking on this immense challenge for us.

“It will be a huge adventure for them and everyone who signs up to do Machu Picchu for us, helping us to walk alongside more families through their child’s life, death and beyond.”

Tŷ Hafan is one of only two children’s hospices in Wales, supporting around 300 children with life-shortening conditions and around 3,000 family members each year.

However, the charity Tŷ Hafan is currently only able to help 1 in 10 families referred to them, making fundraising opportunities like the Machu Picchu trek vital to its continued work.

Find out more about the Machu Picchu Trek and sign up through Tŷ Hafan’s site here.