Adorable best friends who live three thousand miles away fundraise to meet again – after both diagnosed with extremely rare condition
Two adorable best friends with the same extremely rare condition are raising money to meet again – because they live over three thousand miles apart.
Owen Howkins, 10, from Devon, and Giovanni Algarin, eight, from Pennsylvania, USA, were both diagnosed with Schwartz-Jampel syndrome (SJS) – an extremely rare genetic disorder that affects bone and muscle development.
Schwartz-Jampel syndrome is so rare that less than 100 known cases have been reported worldwide, both boys were convinced they would never meet another person with SJS.
But after Giovanni’s mum, Shannon, 30, set up a Facebook page she received a message from Kimi Knott, 32, who wanted her son, Owen, to meet Giovanni.
Kimi and Owen flew half way around the world to Pennsylvania where the boys finally met and they instantly became best friends, they shared an unbreakable bond.
Since then, the boys have regular skype chats every month and Giovanni and his mum are now fundraising to help them raise almost £10,000 to visit Owen and Kimi in the UK next year.
Dedicated Giovanni has even been selling his paintings in a bid to raise the extra cash that is needed – with one selling for 200 dollars.
Owen’s mum, Kimi, a sergeant in the RAF, said: “We were told that Owen would never meet anyone else like him so it took a lot of determination to find Giovanni.
“I would search the internet for hours in a desperate attempt to find someone, then eventually by chance I found Shannon’s Facebook page.
“It was such a relief to know that Owen wasn’t alone in the world and when the boys finally met they were overwhelmed – I have never seen Owen so relaxed and happy around anyone.
“Shannon’s family are now raising money to come and visit us in the UK next year and it is so sweet to hear that Giovanni has been selling his paintings to help.
“My partner and I are getting married next year and we hope more than anything that Shannon and Giovanni are able to make it for the wedding.
“The boys are planning all sorts of mischief including stealing the wedding cake for themselves.
“When they are together they are just two normal kids and both have such a wicked sense of humour.
“Owen is an usher and has asked if Giovanni can be one too, it would mean the world for Owen to have his best friend by his side again.”
Schwartz-Jampel syndrome (SJS) is a rare genetic disorder characterized by abnormalities of the skeletal muscles, including muscle weakness and stiffness, abnormal bone development, and dwarfism.
Since the condition was recognised in 1960, there has been less than 100 cases ever reported, meaning the condition is extremely rare.
SJS can be recognised by small, fixed facial features and various abnormalities of the eyes, some of which may cause impaired vision.
Giovanni was diagnosed with the condition when he was two, after tests were carried out on his blood in Germany, and Owen was diagnosed before the age of two after displaying worrying symptons.
The boys met in August 2015 after Kimi reached out to Shannon through her Facebook page set up for Giovanni.
As SJS is so rare, there is very little support or information on the condition so it meant the world for both families to finally be able to meet.
Kimi added: “Raising a child with Owen’s challenges is really difficult, it can be very lonely at times.
“He struggles with every day challenges such as getting himself dressed but he never complains.
“When I first showed Owen a picture of Giovanni he couldn’t believe it and said to me, ‘he looks just like me.’
“We both never dreamed of meeting someone else with SJS and after our trip to America I feel like a weight has been lifted off my shoulders.”
Giovanni’s mum, Shannon, 30, now wants to raise enough money for Giovanni to visit Owen in the UK in 2017.
Due to medical bills the family have been left with very little spare cash and are hoping to raise nearly £10,000 to make the trip to the UK.
Shannon, a stay at home mum, said: “When Giovanni first started school he struggled to make friends, the kids started to pick on him and call him a baby or ‘grandpa’ because he was in a wheelchair.
“We were told we would never have the opportunity to meet anyone else like him, his condition was just too rare.
“But when I received a message from Kim I couldn’t believe. It was mind blowing to hear another boy of a similar age to Giovanni was living with the condition.
“I remember walking into the living room and Owen was tickling Giovanni and he couldn’t stop laughing.
“To see Giovanni so happy and care free was something I’ve never witnessed before.
“They had a sleepover which was a really big deal as it is so hard to monitor with all of their medical equipment, but to hear them laughing and joking was amazing, they just seemed like two normal boys enjoying time together.
“When Owen left Giovanni was distraught, he broke down in tears and missed him instantly.
“We knew we had to try and raise the money for Giovanni to see Owen again and that’s when we started the fundraising.
“So far we have raised 2,500 dollars but our aim is 10,000 dollars – that would cover the cost of the whole trip.
“Giovanni has been a huge help and is keen to sell more of his paintings in a bid to raise more money.
“If anyone out there has a rare condition they should seek others out, to know you are not alone in the world is the most valuable knowledge.
“Giovanni treasures Owen’s friendship just as I treasure Kim’s, to have someone who understands what you are thinking without even saying it is so important.
“We hope more than anything that we can raise the money, it would mean the world for Giovanni to spend more time with his best friend.”
Caroline Harding, CEO of Genetic Disorders UK, said: “Due to its rarity, there is no exact information on how many cases there are of Schwartz-Jampel syndrome in the world but there are fewer than 150 cases reported in medical literature.
“Being such a rare genetic disorder there is currently no specific UK support group for Schwartz-Jampel syndrome.
“But Genetic Disorders UK works to ensure those affected by these rare conditions are supported and Jeans for Genes Day raises money for Genetic Disorders UK.”
To donate visit: https://www.gofundme.com/giovanniowenvisit