Parents dream of son being able to walk after doctors left ‘baffled’ at cause of condition

“We were completely unaware of what this meant for Rudi and we were thrown into a world of unknowns.”

Dedicated Mauchline parents have launched a campaign to help their six-year-old son reach his dreams of walking.

Rudi was diagnosed with hypotonia and global developmental delay but the cause of the conditions has baffled doctors, his parents say.

Sarah, 45, and Robert Parker, 54, aim to raise £30,000 for rare treatments after striving to improve Rudi’s mobility and overall development in recent years

Rudi was born a healthy baby at full term with no problems but as the months went on he didn‘t meet expected developmental milestones, making his parents feel increasingly worried.

After several visits to doctors, referrals and investigations, Sarah and Robert were advised that Rudi had central hypotonia, a condition that causes low muscle tone in the brain, brainstem, or cervical spinal junction.

Sarah said: “We were completely unaware of what this meant for Rudi and we were thrown into a world of unknowns.

“As the months passed and the appointments with every type of medical professional seemed never ending, Rudi continued to have delays in various areas and we began to learn how low muscle tone was affecting every aspect of his development from gross motor development to eyesight to oral skills.”

Sarah added: “Rudi has hypotonia and global developmental delay but has baffled doctors with no known cause or diagnosis for these symptoms and the difficulties he faces.

“Our little man can’t yet walk, talk or do much for himself but he is the happiest, brightest, cheekiest wee boy who loves everything that other 6-year-olds do.”

With limited public sector support, Sarah and Robert decided to research what treatments were available outwith the NHS and across the world to help Rudi.

They found a specialised physical therapy called Cuevas Medek Exercise (CME) originating in South America that was producing much better outcomes for children than conventional physiotherapy and is said to be the 20th century treatment for children with motor problems.

The family have travelled to London to access this with the only UK based therapist being in England.

Sarah said: “This different approach has been a godsend for our little boy and we have seen so much progress with Rudi now able to sit, stand with minimal support and take steps with very little help. Unfortunately there is only one therapist trained in this technique in the UK which we regularly travel to see in London and also went to Romania last year for two weeks treatment from a specialist.”

Sarah continued: “My husband and I are delighted with the progress we have already seen Rudi make as a result of the therapies. Rudi needs to work really hard for the things we all take for granted but he is a determined wee boy who wants to be mobile and independent.

“All of these improvements in Rudi’s mobility have also had added benefits for his communication and cognitive abilities, he is a clever wee boy who knows his own mind and understands much more than he gets credit for.

“These therapies have been vital for Rudi and really given him a lifeline and hope for the future to lead a life with as much independence as possible. We are under no doubt that without this input Rudi would not have progressed to the stage he has.”

This June, Rudi is also going to the world renowned Napa Centre, recently opened in London, for three weeks.

However, Sarah and Robert say they’ve found it challenging accessing therapies, with each session costing around £130 per hour.

With every trip to other parts of the UK or Europe, there are associated costs not only for therapy itself but the travel and accommodation involved.

Sarah and Robert also need a lot of time off work and use all of their holiday leave to travel with Rudi to intensive treatment sessions as well as taking unpaid leave when necessary which adds to the financial burden.

To help with the cost of these treatments, Rudi’s parents decided to start a fundraiser last year.

The family have already raised over £15,000 and hope to reach their goal of £30,000 with the help from the community.

Sarah said: “We are trying to raise £30,000 to help cover these costs for the foreseeable and we are over half way there with the support of people across Ayrshire and beyond.”

To help with the fundraiser, Sarah’s sister Anne Murray Brown who is a line dancer, decided to organise a fundraising raffle at her Christmas social event.

Sarah spoke about Rudi’s story at the event and hearing about his journey, others within the line dance community decided that they wanted to help too.

Anne raised £700 at her Christmas raffle and following on from this there has been three events since last month organised by line dancing community.

The second event was organised by line dancers Betty McDonald, Diane Glass and Isabella Douglas on February 16 at Heathfield Community Centre where a total of £1,500 was raised.

Wendy Allan, who runs a group called West Coast Country Liners, organised another event to fundraise funds for Rudi on February 23 at Troon Concert Hall where over £700 was raised.

Last Sunday, on March 2, the latest event was organised by Lee Hamilton, a world champion dancer and teacher, with help from Karen Rennie. The event took place at Troon Concert Hall once again, where over £800 was raised.

Sarah said: “We have recently had a lot of support from the line dancing network across Ayrshire with over £3,700 raised so far.

“We are extremely grateful for the kindness of so many and this community of dancers have been amazing with many of them telling me that Rudi’s story has touched their hearts.

“We have loved meeting them and chatting, they are a lovely bunch of people who support each other like a family.”

She added: “It really means the world to us that people are supporting us on this journey and routing for our precious boy to reach his full potential.

“We have had support from lots of people including all of our family, friends and organisations and we are so grateful for all of it.”

To help Sarah and Robert with the fundraiser for their son Rudi, please visit here.

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