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Wolky x Spibi Foundation

WOLKY CARES: SPIBI FOUNDATION

WHEELCHAIR DANCE COMPETITION
FOR ROSANNA
Rosanna is studying Law at the Den Bosch University of Applied Sciences and has been a passionate practitioner of wheelchair dancesport in her spare time for more than ten years. Wheelchair dancing gives her a lot of pleasure – as an activity in its own right, but also because this sport puts her in touch with other people in the same situation. She can talk to them about the issues she encounters every day as a result of spina bifida. Rosanna has had several operations on her back and legs and has therefore spent a lot of time in hospital. She also often encounters a lack of understanding on the part of able-bodied people, such as in crowded situations when people don’t give her the room she needs in her wheelchair. But despite this and other setbacks, Rosanna still has a very positive outlook on life and sees a bright future ahead of her. One of her aims is to show people that you can even reach the top with wheelchair dancing! That’s why she was keen to take part in the Malta Dance Spectacular, an international wheelchair dance competition in Malta last November. But she and her parents were unable to find the money themselves. They approached the Spibi Foundation, who paid for Rosanna to take part. Together with her dance partner Kimberly, Rosanna went on to win one first prize and two second prizes.

NEW REQUESTS
Are you looking for more information about spina bifida? Do you have any questions about it? Or could your family do with a helping hand? The Spibi Foundation is here to help – from a pair of modified trainers, help with legal matters or a balance bike to an electric cargo bike that can carry a child in a wheelchair. Check out the Spibi Foundation at Spibi.nl for more information.

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  Spibi-Foundation

 

WOLKY CARES: SPIBI FOUNDATION

WHEELCHAIR VAN FOR SJOERD
Meet Sjoerd, 21, who is studying to become a paraveterinary technician. With spina bifida and hypermobile joints, Sjoerd’s pain was worsening and his shoulders were chronically strained, putting him at risk of having to give up his studies. We are pleased to have been able to contribute to the purchase of a wheelchair van. This van has made Sjoerd independent and means that he is now pain free and positive about the future again.

Sjoerd is an active young man who is studying to be a paraveterinary technician at Helicon in Nijmegen. It is a beautiful city but one with a lot of hills and uneven streets, making it extremely difficult for a wheelchair user to get about in a self-propelled wheelchair. But it’s even worse for Sjoerd, because besides spina bifida he also suffers from hypermobile joints. In combination with his self-propelled wheelchair, this places chronic strain on his shoulders and causes him a lot of pain.
  Spibi-Foundation
What’s more, when he has to wait in the cold for a taxi, tram or bus, Sjoerd suffers from spasms in his legs which pull his luxated hips into a different position, causing unbearable pain which can only be relieved with a cocktail of strong painkillers.  It was an untenable situation, his parents wrote in their letter to the Spibi Foundation: “If Sjoerd wants to retain physical mobility at his current level, he urgently needs to be able to get about without strain in a vehicle that will take his electric wheelchair, his assistance dog and his self-propelled wheelchair.” Which meant
a van, and they don’t come cheap.
  But thanks to a significant donation from a major fund, a contribution from the Spibi Foundation, a donation from his father and some intensive fund-raising by his parents, they managed to get enough money together to buy a van.

The result: Sjoerd is no longer in pain and doesn’t even have to take painkillers any more, and he is effortlessly doing an internship at the Faculty of Veterinary Medicine at the University of Utrecht, which he drives to in his new van.

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WOLKY CARES: SPIBI FOUNDATION
(Interview Spring/Summer 2018)

PROJECT UPDATE
The Spibi Foundation has recently carried out two new projects for young people with spina bifida.

PROJECT 1: NEW BATHROOM
The first project was about a bathroom for Leah. Leah is 12 years old and 132 cm (4 ft 3 ins) tall. Outside the house she is dependent on a wheelchair, but she can walk around indoors with the help of orthotics. Since 2011, besides being catheterised she has also had to undergo colon cleansing, which takes up a lot of time every day. An adapted bathroom is therefore a must, but the local authority was unable to help, either by providing an apartment with a suitable bathroom or by contributing to the cost of adapting the bathroom. Leah’s parents therefore decided to build an extension above the garage themselves with a bedroom and bathroom for Leah. However, the contractor they used turned out not to be quite the professional they had expected. He left the family with a half finished bathroom which Leah couldn’t use because there were so many things wrong. For example, the water didn’t run down the drain but into her bedroom. There was a hole in the tiling round the toilet, the tiles were cut crooked, there was a door sill missing, the power sockets were loose, the fan made a lot of noise, and much more besides. The contractor refused to offer an appropriate solution, leaving Leah to be lifted into the bath in the family bathroom, washed there and carried back to her bedroom for years. The older Leah grew, the harder it was for her parents to do this, until it ultimately became almost impossible. That’s when they asked the Spibi foundation to help. In just three days, Mark of H&B Bouw and Tim of Haze Elektrotechniek worked hard to complete the unfinished work so that Leah would have a properly functioning bathroom. The entire floor was removed and new tiles were laid, this time with a gradient and grouted in properly. The joins were resealed, the pipes were concealed in timber cladding, various supports, a towel rail and hooks were fitted, and new power sockets, a door sill and a new fan were installed. Now Leah has a bathroom of her own that she can use for many years to come. Our warmest thanks go out to H&B Bouw and Haze Elektrotechniek for their part in this project.

PROJECT 2: LEARNING TO DRIVE
The second project was for 18-year-old Erin, who was born with spina bifida occulta. He can walk about 50 to 100 metres with leg braces, but otherwise he is dependent on a wheelchair with a handbike. His dream is to get his driving licence so that he can become more independent. Or as Erin says himself: “For me it’s important to get my driving licence because it will give me a huge amount of freedom. For example, the degree course I want to take is a long way away and it’s difficult to get there in a wheelchair on public transport. If I had a car I could go wherever I want to without being dependent on other people.” The problem is that adapted driving lessons are twice as expensive as regular ones and Erin’s parents can’t afford them. So they turned to the Spibi Foundation for help. This resulted in a €1,500 contribution towards Erin’s driving lessons. He has already had his first few lessons and we hope very much that he will soon be in possession of that highly prized piece of paper – or photocard, as it is nowadays.

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  Spibi-Foundation

 

WOLKY CARES: SPIBI FOUNDATION
(Interview Spring/Summer 2017)

LITTLE GO-GETTER
Vido is two years old and has spina bifida. He is a very sweet little boy and a real little go-getter, but he also has a lot of problems. The Spibi Foundation has made things a little easier for him with some targeted practical help in the form of a canopy for his electric wheelchair cargo bike.

The Spibi Foundation was set up three years ago by Wolky director Anthony Diks and his wife Ingeborg. The foundation doesn’t offer a cure for spina bifida but it aims to provide targeted practical help that makes life a little easier for children and teens with spina bifida and their parents. One of the Spibi Foundation’s recent projects involved donating money to the disability charity BOSK in support of its first-ever Encounter Weekend for people with spina bifida and hydrocephalus. The weekend was all about playing together, relaxing and having fun. The Spibi Foundation’s donation helped fund some great activities, such as a covered wagon ride and an information and social event on living with spina bifida. Everyone was also given a booklet called Teun wil je wat vertellen [Teun wants to tell you something] and a cuddly Spibi toy.

WEATHER PROTECTION UNDER COVER
Another request the foundation received was from the parents of Vido (2). Vido has spina bifida and was operated on before he was born, at 25 weeks, but he still has a lot of problems. He has to be washed and catheterised daily, he wears leg braces and he is largely wheelchair-bound when he leaves the house. He absolutely loves going out in the electric wheelchair cargo bike with his brother and sister, but it’s not so nice when it rains. Vido can’t tolerate a hat on his head, but a hood for the cargo bike wasn’t covered under the local authority’s insurance programme. So the Spibi Foundation offered Vido’s parents Debbie and Franke a hood for the electric wheelchair cargo bike so they can also take it out in rainy weather. An offer they simply couldn’t refuse! To round off the celebration, besides the hood they were also presented with a lovely foil balloon bearing the Spibi Foundation
  Spibi-Foundation
snake. Debbie: “It was fantastic, especially since Vido has a latex allergy and can’t touch ordinary balloons.”

FACTSHEET
Besides offering practical help, the Spibi Foundation also provides information on spina bifida, a condition that is not well known. For example, it produced a factsheet on spina bifida in collaboration with BOSK, a Dutch interest group for disabled people and their families. The factsheet explains in layman’s terms what spina bifida is, what consequences it can have, and where to get more
  information about it. Would you like to find out more about spina bifida? Do you have any questions about it? Or could your family do with a helping hand? The Spibi Foundation is here to help! From a pair of modified sneakers, help with legal matters or a balance bike to an electric cargo bike designed to carry a person in a wheelchair. Check out the Spibi Foundation at Spibi.nl for more information.

Copy Fleur Baxmeier

 

WOLKY CARES: SPIBI FOUNDATION
(Interview Autumn/Winter 2016)

A HELPING HAND
Julian is 9 years old and has spina bifida. This year he will be undergoing major surgery on his right foot which will take him at least five months to recover from. The Spibi Foundation will make his recovery a little easier with some targeted practical help in the form of a balance bike he can ride on days out with his family or on his annual school trip.

The Spibi Foundation was set up two years ago by Ingeborg Diks, the wife of Wolky director Anthony Diks. The foundation doesn’t offer a cure for spina bifida but it aims to provide targeted practical help that makes life a little easier for children and young people with spina bifida and their parents. The foundation completed its first project last year: an entertaining children’s book that explains what spina bifida is in terms that kids can understand.

MAJOR OPERATION
One of the requests the foundation received was from the parents of Julian (9). He has spina bifida and will be undergoing surgery on his right foot this year. The hope is that this major operation will enable him to walk better in the future. To make his recovery a little easier, the Spibi Foundation is providing Julian with a balance bike that he will be able to use over longer distances. It will keep him mobile without putting too much strain on his knees.

FACTSHEET
Besides offering practical help, the Spibi Foundation also provides information on spina bifida, a condition that is not well known. For example, it produced a factsheet on spina bifida in collaboration with BOSK, a Dutch interest group for disabled people and their families. The factsheet explains in layman’s terms what spina bifida is, what consequences it can have, and where to get more information about it.

BLOG BY A TOP LEVEL SPORTSMAN
Another inspiring source of information is Rogier Croes (30), a blogger on the Spibi Foundation website. Rogier has spina bifida myelomeningocele, works full time, and plays sports at the highest level as a member of the Dutch wheelchair hockey team. He writes an inspiring blog about his sports activities and everything else he is going through in life at http://www.spibi.nl/Voor-wie/Columns-Rogier.aspx.
 

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  Spibi-Foundation

 

WOLKY CARES: SPIBI FOUNDATION
(Interview Spring/Summer 2016)

A HELPING HAND
The Spibi Foundation is an organisation dedicated to helping children and young adults with spina bifida. There is no cure for spina bifida, but thanks to the dedicated and practical help offered by the Spibi Foundation, we can try to make life a little easier for sufferers. The Foundation recently completed its first project: an entertaining children’s book that explains what spina bifida is in terms that kids can understand.

SPIBI FOUNDATION
Social engagement is an important part of our philosophy at Wolky. We learned about the disease spina bifida through Teun, the son of friends of Wolky director Anthony Diks and his wife Ingeborg. Anthony and Ingeborg’s thoughts were: We have two healthy children and our own successful business. Can’t we give something back? The result is the Spibi Foundation, set up last year to offer children and young adults with spina bifida practical help that makes their lives just a little better.

TEUN IN THE LEADING ROLE
The first project was a children’s book starring Teun as the main character. Dutch TV presenter Sander Janson visited Teun’s school to present him with the very first copy, followed by a short interview. Sander: “So, Teun, why is it so important to draw attention to spina bifida?” Teun: “Because other kids don’t laugh at me once they understand what I’ve got.” A thousand copies of the book have been printed. Children with spina bifida can order one for free. The retail price for everyone else is € 5.

SCANCOVERYTRIAL
Earlier this year, Sander Janson reported on the ScanCoveryTrial, a seven-day rally through Scandinavia in the snow and ice and temperatures as low as -40°. In 2015, the Wolky/Cloud 9 team took part on behalf of the Spibi Foundation, one of the ScanCoveryTrial’s good causes that year. There were three Spibi teams altogether, which Sander Janson followed for his TV report. A very special way of attracting attention to a very special foundation.

FACTSHEET
The Spibi Foundation’s second official project is also well under way. It is working with BOSK, a Dutch interest group for disabled people and their families, to produce a factsheet on spina bifida. The factsheet will explain in layman’s terms what spina bifida is, what consequences it can have, and where to get more information about it. It will be available in all teaching hospitals in the Netherlands, giving people an easy way to explain to their families and friends what spina bifida entails.

DONORS AND VOLUNTEERS
Other projects in the pipeline are an experience weekend for families with children with spina bifida and an electric cargo bike that can carry a child in a wheelchair. The Spibi Foundation can also provide an extra pair of modified walking shoes, a balance bike, modifications around the home, or assistance with legal matters. If you have any questions or would like to register as a donor or volunteer, check out the Spibi Foundation online at Spibi.nl.

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  Spibi-Foundation

 

 

WOLKY CARES: SPIBI FOUNDATION
(Interview Autumn/Winter 2015)

WHERE THERE’S
A WILL,
THERE’S A WAY
Playing sports, playing with friends, going to school. These are things that most children take for granted. But not Teun (age 5). He has spina bifida, an illness that is not widely known – but one that has a serious impact on the sufferer’s daily life. Teun’s mother, Audrey, explains what spina bifida means in everyday life.

“A person can cope with a lot, I’ve learned. It’s your child, so you gladly take on all the extra care they need. Mentally, Teun is just a lovely five-year-old. Complete with a mischievous streak and a constant stream of delightful banter. In that respect he gives me so much pleasure, but I don’t have that light-hearted feeling about him that I see in other parents. Running barefoot across the grass, rolling in the sand, or going to play with a friend for the afternoon. I’m constantly thinking about Teun’s condition and his health. I can’t just say: “Go on and play, have fun”. I find that really hard.
“Even as a baby Teun had difficulty passing solids. He regularly had constipation, an unexplained high temperature, a sore bottom, a foot at a strange angle. In his first year we took him to the doctor a lot, but every time we were sent away again: ‘Give him some laxatives; constipation is very common in children.’ We were not taken seriously, and it was only after we came across spina bifida ourselves by googling that the doctor said: ‘Teun might well have that.’ Then it took a good six months to get the official diagnosis.”

MEASURING AND FITTING
“I had never heard of spina bifida before, and I had no idea what to expect. Now we’re five years down the line and I feel like an expert in this condition. Teun has various limitations: he is incontinent and he has difficulty walking. Without wanting to denigrate him, it’s almost as if I still have a baby. I live by the clock because I have to take him to the toilet every few hours, I have to irrigate his bowel every evening, and I have to help him put on special shoes because he can’t walk without them. “Spina bifida is a congenital defect in which the spine and spinal cord are not properly formed during pregnancy. There are various forms, of which Teun has the most common: spina bifida occulta, which literally means ‘hidden split spine’. The only visible sign on the back is a lump, a dimple, a red mark or a patch of hair. In some cases there is nothing to see at all, so this form is often only discovered by chance in a CT scan or a back X-ray.
“Having a child with spina bifida means providing a huge amount of care. Teun sees so many different specialists: a urologist, a neurologist, a neuro­surgeon, a rehabilitation specialist, a physio­therapist, a social worker, and a paediatrician. He also goes to a rehabilitation centre, where he has a rehabilitation specialist and a special needs educationalist to help him learn to cope with the fact that he is different from other children. When he needs new shoes, it’s not simply a matter of going to a shoe shop. No, first he has to go through months of measuring and fitting at a shoemaker’s.

FACING THE FUTURE WITH COURAGE
“I’m trying to let Teun grow up like a normal child as much as possible, but some things are difficult. Like the special shoes he has: they come up to just below the knee so he can’t roll off his feet, and running is harder for him and uses up a lot of his energy. Because he is incontinent, he can’t just pop round to a friend’s house to play for the afternoon. And he always has to watch what he eats. Sure, Teun can have the odd portion of chips or ice cream, but he has to balance that out by eating lots of healthy food. If he doesn’t, he risks becoming constipated.
“Life with Teun is full of big and small challenges. Learning to walk, riding a bike without stabilisers, going to a children’s party.
 
Spibi-Foundation When he does, there is so much to think about: what do I need to take with me, will he get healthy food, will he get too tired, will there be somewhere where I can change him? It’s quite a performance, but I do it. We tackle every challenge with a positive attitude because we want Teun to have as normal a childhood as possible. He will always have his disability, but what we want is for him to be as strong as he can be going into the future. And for him to think: OK, I have my limitations, but everyone has problems. “I clearly remember running back to the car on the day Teun got his spina bifida diagnosis. It had been a very difficult day, with all kinds of tests from early in the morning until late in the afternoon. Teun was exhausted and we had got the worst news. But all I could think was: Teun will be OK. He will go far, and when he is 25 we will say: ‘What were we worried about?’ He’s so entertaining, so funny, so open. My Teun will get through this: I’m absolutely convinced of that.”

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Photography Anneke Nijman and Esther Zwitselaar-Nijman

SPIBI FOUNDATION
Social engagement is an important part of our philosophy at Wolky. We learned about the disease spina bifida because of Teun, the son of friends of Wolky director Anthony Diks and his wife Ingeborg. Anthony and Ingeborg’s thoughts were: We have a healthy company and two healthy children. Can’t we give something back? The result is the Spibi Foundation, a charity set up last year that is dedicated to improving the lives of children and young people with spina bifida in a practical, targeted way. The first project is to produce a reading book for young children with Teun in the leading role, explaining what spina bifida is in a fun, easily understandable way. There are several projects on the drawing board, but there is a lot to do in the meantime. The Spibi Foundation is therefore working hard to find donors and volunteers who are willing to help, for example by organising campaigns or activities. To find out more, go to
spibi.nl.