Why this crowdfunding?

We are a young family from Limburg, The Netherlands. Berit, the mom of the family, has been diagnosed with hypermobile Ehlers-Danlos syndrome. In short, this means that her joints will dislocate regularly and that she is always in pain. Soon she will receive an electric wheelchair. Click here for more information about the syndrome and the impact it has on a young family.

There is urgent need for a wheelchair friendly house, as Berit can barely walk up stairs and all normal routes through WMO and municipality are a dead end. The family also needs a wheelchair bus, so that Berit can continue to go to work. But the money for these big changes is lacking and therefore we need your help!

Will you help us collect money so that this family can quickly move to a wheelchair friendly house and Berit can enjoy family life again? Money for a wheelchair bus is also important so that Berit is able to work and keep working, to prevent the financial gap from increasing.

Want to know more?

Read the whole story below.

Our full story

I am diagnosed with hypermobile Ehlers-Danlos syndrome, a genetic connective tissue disorder. My connective tissue, which is located everywhere in the body, is not structured the way it should be. In my case, this means I have a lot of hypermobile joints, which dislocate or subluxate frequently, chronic pain throughout my body which is unresponsive to pain medication, and issues regulation my blood pressure, heart rate and body temperature due to dysautonomia.

I use silver splints to support my wrists, hands and fingers. Sometimes I need to wear braces to rest my shoulders, which always 'hang' in a subluxation. When walking, my hips and feet are not stable and sometimes subluxate. In a few months, my electric wheelchair will be ready and I will be able to move around with less pain, hopefully going out more with my husband and two girls, Elyza of 3.5 and Izaballa of 1.5 years old.

I cannot physically take care of them, so I do what I can do and that is work fulltime. It gives me a lot of energy and keeps my mind occupied. My syndrome cannot be cured and I expect to only get worse.

We are facing two major issues. When I get my wheelchair, it will not fit in my car. I cannot lift the wheelchair, with its 45 kg, as this will cause dislocations of my shoulders and issues with my back. I would love to bring it to work, so I can use it there, and also do things outside of work, like visiting our families who all live on the other side of the country. The UWV will not arrange the required adaptations, as I am just above the income limit. So eventually, I would finally have my wheelchair, but no way of getting anywhere as we cannot take it with us in a car.

The other issue is our living situation. I need a wheelchair friendly house, WMO cannot adapt our current rental house, due to lack of space. So we are forced to move into a house that is already adapted and will get a compensation to move, which is barely anything. But, due to my income, we can no longer apply for social rentals. When looking at the private renting market, there are no wheelchair friendly houses available. So we have to buy. The issue with buying is that we do not have the financial means to pay the 'kosten koper' buyer's costs. And even if we did, we have been looking for so long, there are no wheelchair friendly houses out there within our budget. The only option would be to buy a house that does not have any adaptations, but does have the possibilities to make it wheelchair friendly. Only, the WMO would then not pay for adapting the house, as in this case, we willingly moved to an 'inadequate' house and therefore would not help. And, these houses that might be adaptable often fall outside our budget.

You can see how we are completely stuck. And time is running out. Walking up the stairs to my bedroom and bathroom is getting harder by the day, but is no longer safe. We need to move to a house where I can move around safe and free.

I need to be able to get to work and bring my wheelchair, so it will take me less energy and cause less pain. We as a family need less stress, so we can spend our energy on accepting the fact that I will not get better, and find a way to make it all work. There is a 50% change our daughters have the syndrome as well and our oldest daughter is already showing classic signs. We owe it to them to make our house safe for all of us.