Hello to all of you who found a minute to read Dominik's story. Our names are Ela and Marcin and we are fundraising for our son who was born with a rare genetic condition called Chondrodysplasia Punctata X-linked Recessive, which affects the correct development of soft bone and cartilage.

Meet Dominik.

He is the smiliest, kindest and bravest little boy. Ok…We might be biased as his parents, but he does steal the heart of everyone he meets. This is despite dealing with significant health challenges. Dominik loves being outdoors, camping, going for a walk and exploring. Beach is his favourite place on Earth. He also loves being in the water (he can’t swim yet, but it doesn’t stop him from wanting to be in the pool for hours). A stroll by a busy road, where he can spot his favourite buses and trucks, is also good fun. At home, Dominik likes to help out in the kitchen preparing delicious meals, especially with baking, play sink or float or watch his favourite shows, mostly about science and geography.

His health

By now, you are probably wondering why he cannot enjoy some things as much as children without health disadvantages. Dominik was born with a rare genetic condition called Chondrodysplasia Punctata X-linked Recessive, a disorder of cartilage and bone development (you can read more about his health condition in detail at the bottom of this page). A common and severe bone structure defect associated with this genetic condition is a 1st and 2nd vertebrae narrowing where the spinal cord goes through. Dominik’s neurosurgeon believes that his spinal cord has been damaged at some point during his early development at the pregnancy stage or during a traumatic birth (hospital staff told Ela to give birth naturally despite our concerns about Ela’s unnaturally large amount of amniotic fluid and our repeated pleas for c-section).

All the above has left Dominik with weakness in his lower part of the body and his left leg being partially paralysed. Currently, his main method of moving around the house is crawling, which is the positive effect of private physiotherapies abroad (once a year) and regular exercise at home with us. When he goes to school and ‘out and about' his only way of moving around is in his wheelchair. He requires constant assistance with pushing him as his current wheelchair is way too heavy for his weakened neurological strength.

Financial support

He has now outgrown his wheelchair, but the quote for the more suitable one has been a shock to us (£4000), and there is no chance that we can currently afford it. This is one of the reasons why we decided to start camping to raise funds together with a help of amazing people like you :)

Another reason why we are fundraising is Dominik’s private local physiotherapies which, as you can probably imagine, are very expensive. It costs £75 per 1-hour session, and he requires at least three sessions a week to give him any chance to achieve his goal of walking independently in the future. This constitutes a cost of over £10.000 a year which is beyond our financial capabilities considering that only one of us is working (Ela is his carer but is now actively looking for work).

Just to summarise, what we are we raising funds for:

- specialist mobility and exercise equipment

- regular physiotherapy sessions

Equipment:

There are things in life that money can’t buy, but there are also many that it can. This is especially true for people living with a disability like our son. An appropriate wheelchair can help with those walks and allow more independence. A good standing frame can make it easier to be more involved with cooking, baking and other household chores that he loves helping with (especially cooking). Some extra physiotherapy sessions can improve mobility and Dominik’s general well-being. There are many things that are available that can help, but they are, unfortunately, very expensive. Those mainly include:

- appropriate lightweight wheelchair to help Dominik with everyday mobility

- small footprint standing frame to strengthen his bones and allow him reach worktops

- specialist exercise bike to help improve leg coordination and strengthen his bones

- lightweight gait trainer (walking frame) to help him move around the house in a stand up position and improve walking, balance, and posture

Physiotherapies:

We are doing our best to help Dominik improve his mobility and independence. He has physiotherapy provided daily (by us) at home and, every 3 to 6 months, provided by his NHS physiotherapist. On top of that, at least once a year, we go abroad to do some more intense physiotherapy treatment (3 – 4 weeks at a time). He is very patient with his exercises, and even if he struggles, he never gives up. All of his and our efforts are bringing positive results, and his mobility, especially in the lower part of the body, has improved. But there is so much more that can be done to improve his mobility and independence further. For example, additional physiotherapy with a professional therapist a few times a week can strengthen his whole body and improve the use of his legs and speed up the process of learning to walk.

Why are we doing this

We have, therefore, decided to set up this page for people who would be willing to support us in making Dominik’s world the best it can be.

Oh, we almost forgot…

...to add to all the drama we have experienced as a family, it is probably worth mentioning that Dominik’s dad has been battling an incurable brain tumour (Glioblastoma Multiforme Grade IV) for the past 12 years. He is now considered a long-term survivor, has MRI check-ups every six months and is doing considerably well, considering that he is now missing a small part of his brain.

More details about Dominik’s health

His genetic condition is associated with multiple significant medical problems, including:

So far Dominik has had 5 surgeries and countless MRIs, RTGs, CTs and USG scans. He sees multiple doctors and health care professionals on regular basis, including neurosurgeons, orthopaedic surgeons, paediatricians, ophthalmologists and optometrists, nephrologists, urologists, audiologists, physiotherapists, orthotists….and possibly some other health professionals who we have lost a count of

‍♂️ WE RUN FOR DOMINIK ‍♀️ Join Us for Fundraising Runs!

We have come up with a new and exciting way to fundraise for Dominik's needs. We are organising monthly short-distance runs that are open for anyone to join! The runs offer a great opportunity to meet Dominik in person and have some fun while running. To sweeten the deal, delicious food and hot drinks will be provided. The best part? You don't have to be an experienced runner to join, as distances start from 1.5km up to 5km. So even if you have a baby in a pram, you can join the fun Come and join us by clicking on this link: https://www.facebook.com/WeRunForDominik/