A dedicated father climbs Everest in memory of the ‘always smiling’ boy he lost at 18 months and raises money for the charity that helped him get through his grief.

Sales manager Danny Kenworthy, 45, and his wife Nicola, 41, a speech-language pathologist, were devastated when their son, Henry, was diagnosed with Noonan syndrome – a genetic condition with common symptoms, including deformities heart and stunted growth.

When she died, just 18 months old, in March 2019, leaving the couple and her big sister Matilda, six, overwhelmed with grief, they turned to Reuben’s Retreat, a charity that supports families who have lost a child or who have a child with a complex disease.

Danny pictured here with Henry, Nicola and Matilda (Collect / PA Real Life).

Danny, from Manchester, who celebrated the arrival of baby Archie, born on March 6 – a day after the two years after his older brother passed away – said: ‘Henry was the perfect baby, no matter what, he was still smiling.

“Losing him was really difficult. Ruben’s retirement was incredible. Just having a support group to talk to has helped me a lot.

Determined to raise funds for Reuben’s retreat in memory of Henry, Danny – who has an adult son, Joe, 22, a full-time student from a previous relationship, will walk 5,384 meters through the Himalayas to Everest Base Camp in April 2022.

He said: “Reuben’s Retreat is an amazing organization. They have helped us a lot in our grief and are always with us every step of the way.

“From the moment we got into the group, after hearing about the association a month after losing Henry, it helped.

“Just having someone to talk to who’s been through the same thing really helped me. There are some things you just need to say away from your family.

Danny says Henry, pictured here, was still smiling (Collect / PA Real Life).

Danny says Henry, pictured here, was still smiling (Collect / PA Real Life).

He added, “It’s so nice to let our feelings out. We always go there once a month and I am also part of a dads group which is really helpful.

Henry was born on September 1, 2017 after a difficult pregnancy.

“The pregnancy was horrible,” said Danny.

  • One in 2,500 children is born with Noonan syndrome.

  • The condition is caused by a defect in one of several genes.

  • The condition can range from mild to severe

He added: “We had to have two MRI scans to check Henry’s brain and were referred to a specialist consultant.

“It was a crazy time, but the closer we got to birth, the more everyone thought he was going to be okay.”

Urgently rushed to intensive care immediately after giving birth, Henry was soon afterwards diagnosed with Noonan syndrome, a genetic condition that affects 1 in 2,500 children who, while showing common symptoms, is also very individual for each child.

“Noonan syndrome can be serious, but it can also be relatively mild and people can lead normal lives,” Danny said.

“Henry was just perfect. He got stronger and stronger, coming home at two months, after balancing his meds. “

Despite countless hospital visits, treatments, and a feeding tube for nine months, Henry brought sunshine into the lives of the family.

Henry was diagnosed with Noonan syndrome shortly after his birth in September 2017 (Collect / PA Real Life).

Henry was diagnosed with Noonan syndrome shortly after his birth in September 2017 (Collect / PA Real Life).

“He was so happy the whole time,” Danny said.

“He was small for his age, at 18 months he wore six to nine month clothes, so he was a very little boy. He couldn’t walk, but he could move.

“He always woke up with a big smile. He would go with the flow and sleep so well.

But tragically, Henry passed away in March 2019, leaving Nicola, Danny and their family heartbroken.

“It was an incredible moment,” said Danny, who is awaiting an investigation into Henry’s cause of death, which he hopes will take place next year.

“You think that’s what happens to other people. It was a difficult time; I remember Mathilde coming in from the nursery and asking to see Henry.

He added, “She was so upset when we told her. She still cries about it now and misses him. Pain tears you apart.

“I wanted to be left alone after losing Henry. My family, bless them, tried so hard, but I didn’t want anyone around me.

“Nicola and I handled our grief very differently. “

Nicola, pictured here with Henry, didn't have an easy pregnancy (Collect / PA Real Life).

Nicola, pictured here with Henry, didn’t have an easy pregnancy (Collect / PA Real Life).

He added: “And for the first month it was chaotic as we were having the funeral.”

Throughout their grief, Reuben’s Retreat has played an invaluable role.

“The Reuben’s have been great for us and I want to raise money for them in memory of Henry,” said Danny.

  • The condition affects each person differently.

  • The most common symptoms are unusual facial features, limited growth, and heart defects.

Finally, on March 6, 2021, Henry’s family had something to celebrate, with the arrival of baby Archie.

“Archie is amazing,” Danny said.

“It was not an easy time after losing Henry, Archie, as well as Matilda and Joe, were a glimmer of light and allowed us to focus.”

He added: “We knew the date would be close to Henry’s loss, but we didn’t think it would be so close.”

While having Archie is a joy for the family, watching him grow up also brings harsh reminders of the little boy they lost.

“It’s difficult because Archie is physically the same height as Henry before he died and looks like him,” Danny said.

He added: “It can be overwhelming, but it also brings back fond memories.”

And Danny is determined that something positive will come out of his son’s passing – so he’s started raising money for Reuben’s Retreat.

He said: “Reuben has been amazing to us and we wanted to give back and raise awareness – to promote the amazing work they do.”

Danny on his golf fundraiser with Matilda and Archie in August 2021 (Collect / PA Real Life).

Danny on his golf fundraiser with Matilda and Archie in August 2021 (Collect / PA Real Life).

He added: “I had a golf event in August 2021 where we completed four rounds of golf in one day, it worked out 72 holes in one day which is a lot.

“In November of this year I’m cycling 300 miles in a month and in May 2022 I’m going to climb three peaks: Snowdon, Scafell Pike and Ben Nevis.

But most impressive of all, Danny is planning a 5,384-meter Everest trek in Easter 2022, in order to raise money for the charity.

“A group of guys from Reuben were talking about trekking to Everest,” Danny said.

“I’m pretty fit and it’s been on my bucket list for a really long time. I did a bit of preparation, but you can’t really prepare for the altitude.

“The most important thing is to raise money for Reuben’s retirement because it is so close to our hearts. “

Urging other families who are losing a child to turn to a support group, Danny explains how important it has been to find a safe place to talk.

He said: “Reuben’s is a place where we can express ourselves.

“I can’t even explain what it’s like to lose a child, but they have given us so much support and still do.”

He added: “Some days it’s difficult. Sometimes I think I should have a four year old now, but it’s okay to be sad.

“We talk about Henry all the time and have pictures of him all over the house.

“We try to be thankful for what we have now and we just remember Henry as the sunny little boy he was.”

* Danny and Nicola will not discuss Henry’s cause of death as they await an investigation next year before deciding how to move forward.

To donate to Danny’s Everest Trek, go to https://www.justgiving.com/Danny-Kenworthy1 and to learn more about Reuben’s Retreat, visit www.reubensretreat.org/what -we-do


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