Family and friends of Jude Hudson have raised £10,000 for The Schinzel-Giedion Syndrome (SGS) Foundation in July

Emma Hudson, Secretary of The SGS Foundation and mother to Jude (diagnosed with Schinzel-Giedion Syndrome at 3 months old), writes about her recent fundraising endeavor:

Born in the month of July, in the height of a hot summer, Jude was our second child and a much-loved little brother to Fraser. From before his birth, it was evident that Jude had many symptoms that would eventually add up to a diagnosis of Schinzel-Giedion Syndrome. He suffered from seizures, feeding difficulties, hearing and visual impairments, urinary tract and kidney abnormalities causing significant and recurring urinary tract infections, skeletal abnormalities including talipes (club feet), as well as a host of bowel and respiratory challenges. His care was extremely complex, difficult to co-ordinate and involved numerous medical specialists.

Jude passed away at the age of 3 suddenly and quickly from complications associated with Schinzel-Giedion Syndrome. His short life was painful and difficult at times, but he was always loved and was always shown the utmost care and respect by all those who had the honour of being part of his life.

Having a child with complex care needs is exhausting, emotionally overwhelming, financially difficult and puts a huge strain on your ability to maintain and build relationships with anyone outside of your immediate family.  When we mooted the idea of a fundraising challenge on behalf of Jude for The SGS Foundation, our expectations were that we would manage to raise a few hundred pounds and would be doing most of the running and walking on our own. This could not have been further from the reality.

Tumultuous grey skies and unpredictable weather – a suitable metaphor for our family’s journey

The challenge we settled on was to walk along the northeast coast of England from the gates of Scarborough Castle to the steps of Whitby Abbey – a distance of 21 miles across an undulating landscape, up and down steps and hills, in and out of windswept bays with dramatic rocky cliff looking out across the North Sea with its tumultuous grey skies and unpredictable weather.  It seemed a suitable metaphor for the journey our family has been on over the last few years!

The month of July was chosen to coincide with what was Jude’s 5th birthday. We really wanted to make July all about Jude this year.

A team of 18 family and friends pledged to join us on the walk and the fundraising began in earnest.  Using the Just Giving platform,team members were able to share their own fundraising pages, all linking into the central Team July For Jude.  Fraser and his friends also pledged to join the walk for the final 7 miles – a decent challenge for their little 9 year-old legs!

The weather was initially kind with blue skies and gentle sunshine accompanying us as we set off early in the morning. The mighty Scarborough Castle soon became a diminutive landmark in the distance as we hiked towards Whitby.

We were supported along the way by committed family and friends including Jude’s grandparents who waited at checkpoints with a supplies and one of Jude’s godmother’s who provided a much needed lunchtime energy boost!

Mud caked walking boots and plenty of tears

By the time Fraser, his friends and other team members joined at Robin Hood’s Bay, the threatening thunder had turned into torrential downpours making the rocky path along the coast challenging. There were walking boots and trainers caked in mud with plenty of mud sliding and tears. The uneven path and slippery conditions exacerbated the blisters and made the final stretch of the walk really tough.

At last the towering peaks of Whitby Abbey emerged through the rain and fog and the path’s end came into sight. Every team member completed the walk, with no man, woman or child left behind! A well-earned drink was enjoyed by all at the finishing point of Whitby Abbey Brewery.

In addition to the hub team, a satellite team of 3 ladies walked 21 miles through West Yorkshire, along roads and footpaths, through villages and towns, in the rain and with friends and family cheering them on along the way. Their journey was separate but their purpose was the same – to raise funds for The SGS Foundation, to remember Jude and show support for his family.

During the month of July, several other friends also committed to completing 21 miles at various paces. Again, these team members walked with the purpose of raising sponsorship for The SGS Foundation whilst remembering a special boy.

Team July For Jude 2023 has raised a massive £10,000 for The SGS Foundation.

This total is an amazing achievement for the whole team. The support of our family and friends has been unwavering and we are so grateful for all their efforts. Every blister was worth it!

We hope that the funds raised can be directed towards a project that will have a real impact on the lives of children born with SGS. So little is understood about some aspects of the syndrome. It is down to patient advocacy groups such as The SGS Foundation to get the ball rolling and start to make the medical community more aware of the condition by funding projects. These projects will lead to a better understanding of SGS and to the development of new therapies and medications which can help to make the lives of SGS children longer and more comfortable.

Jude’s legacy of kindness and community has made all of this possible, and we are incredibly grateful.

If you would like to donate to The Schinzel-Giedion Syndrome Foundation, and make a real difference to the lives of children with this rare genetic condition, please click the button below.