A devoted dad is climbing Everest in memory of the “forever smiling” boy he lost at 18 months and raising money for the charity that helped him through his grief.
Sales manager, Danny Kenworthy, 45, and his wife Nicola, 41, a speech and language therapist, were devastated when their son, Henry, was diagnosed with Noonan syndrome – a genetic condition with common symptoms including heart defects and stunted growth.
When he died, aged just 18 months, in March 2019, leaving the couple and his big sister Matilda, six, overwhelmed by grief, they turned to Reuben’s Retreat – a charity that supports families who have lost a child, or have a child with a complex illness.
Danny, of Manchester, who celebrated the arrival of baby Archie, born on March 6 – a day after the two year anniversary of his big brother’s passing – said: “Henry was the perfect baby, no matter what, he was always smiling.
“Losing him was really hard. Reuben’s Retreat were amazing. Just having a support group to speak with helped so much.”
Determined to raise money for Reuben’s Retreat in Henry’s memory, Danny – who has a grown-up son, Joe, 22, a full time student, from a previous relationship, will be trekking a massive 5,384 metres through the Himalayas to Everest base camp in April 2022.
He said: “Reuben’s Retreat is an amazing organisation. They helped us so much through our grief and are still with us every step of the way.
“From the moment we went to the group, after being told about the charity a month after losing Henry, it helped.
“Just having someone to talk to who has been through the same thing, it really helped. There are some things you just need to say away from your family.”
He added: “It’s so nice to let our feelings out. We still go once a month and I’m also part of a dad’s group which is really helpful.”
Henry was born on September 1, 2017 after a difficult pregnancy.
“The pregnancy was horrendous,” said Danny.
One in 2,500 children are born with Noonan syndrome.
The condition is caused by a fault 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 the birth the more everyone thought he’d be okay.”
Rushed to intensive care straight after his delivery, Henry was soon after diagnosed with Noonan syndrome, a genetic condition that affects 1 in 2,500 children which, while it has some common symptoms, is also very individual to each child.
“Noonan syndrome can be severe, but it can also be relatively mild, and people can lead a normal life,” said Danny.
“Henry was just perfect though. He went from strength to strength, coming home at two months, after they had balanced his medication.”
Despite countless hospital visits, treatments and having a feeding tube for nine months, Henry brought sunshine into the family’s life.
“He was just so happy all the time,” said Danny.
“He was small for his age, by 18 months he was in six to nine month clothes, so he was a tiny lad. He couldn’t walk, but he could scramble around.
“He always woke up with a big smile. He would go with the flow and slept so well.”
But tragically Henry passed away in March 2019, leaving Nicola, Danny and their family completely heartbroken.
“It was an unbelievable moment,” said Danny, who is awaiting an inquest into the cause of Henry’s death, which he expects to take place next year.
“You think this is what happens to other people. It was a tough time; I remember Matilda bounding in from nursery asking to see Henry.”
Our second lot of Snowdon Trekkers walk overnight & summit at sunrise in the early hours of this morning 😊 good luck to all 9 🤩 Special thanks to @Adventures_UK for leading on this fabulous fundraising challenge! Good luck sunrisers! Enjoy 🌅 pic.twitter.com/vnMBod7K1K
— Reuben's Retreat (@ReubensRetreat) August 21, 2021
He added: “She was so upset when we told her. She still cries about it now and misses him. The pain just rips you apart.
“I wanted to be left alone after losing Henry. My family, bless them, tried so hard, but I didn’t want any one around me.
“Nicola and I dealt with our grief very differently.”
He added: “And for the first month it was chaotic, as we organised the funeral.”
Throughout their grief, Reuben’s Retreat have played an invaluable role.
“Reuben’s have been amazing to 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, restricted growth and heart defects.
At last, on March 6 2021, Henry’s family had something to celebrate, with the arrival of baby Archie.
“Archie is amazing,” said Danny.
“It wasn’t an easy time after losing Henry, Archie, along with Matilda and Joe, were a glimmer of light and gave us focus.”
He added: “We knew the date would be close to when we lost Henry, but we didn’t think it would be so close.”
While having Archie is a joy for the family, watching him grow also brings some tough reminders of the little boy they lost.
“It’s hard, as Archie is physically the same size as Henry was before he passed away and looks like him,” said Danny.
🌞 Sunshine Challenges! 🌞
We're already thinking ahead to next year and we have some amazing and exciting challenges coming up. 🙌
If you would like to register your interest, please contact firstname.lastname@example.org for more information. pic.twitter.com/BczKKJQsv5
— Reuben's Retreat (@ReubensRetreat) July 29, 2021
He added: “It can be upsetting, but it also brings up good memories.”
And Danny is determined that something positive should come from his son’s passing – so has started fundraising for Reuben’s Retreat.
He said: “Reuben’s have been amazing to us and we wanted to give back and raise awareness – to promote the amazing work they do.”
He added: “I organised a golf event in August 2021 where we completed four rounds of golf in one day, it worked out at 72 holes in a day which is a lot.
“In November 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 preparing a 5,384 metre Everest trek in Easter 2022, to raise money for the charity.
“A bunch of guys from Reuben’s were talking about trekking to Everest,” said Danny.
“I’m pretty fit and it’s been on my bucket list for a really long time. I’ve been doing a little prep, but you can’t really prepare for the altitude.
“The most important thing is raising money for Reuben’s Retreat, as it is so close to our hearts.”
— Reuben's Retreat (@ReubensRetreat) June 7, 2021
Urging other families who lose a child to turn to a support group, Danny explains how important finding a safe place to talk has been to him.
He said: “Reuben’s is a place where we can express ourselves.
“I can’t even explain what it feels like to lose a child, but they gave us so much support and still do.”
He added: “Some days it’s hard. Sometimes I think I should have a four year old right now – but it’s ok to be sad.
“We talk about Henry all the time and have pictures of him throughout the house.
“We try and be grateful for what we have now and just remember Henry as the sunny little boy he was.”
* Danny and Nicola will not discuss the cause of Henry’s death, as they are waiting for an inquest 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 find out more about Reuben’s Retreat go to www.reubensretreat.org/what-we-do