Alex Wall is planning to take part in the Rat Race Full Mucker challenge at Burghley House in Cambridge on May 11th to raise funds for research into an extremely rare genetic disorder. He also hopes to raise awareness of this condition which is so rare that there are only about another 50 cases worldwide.

Alex and Becky Wall have fought a constant battle since their daughter, Maddie, who is now nine, was born.

Almost two years ago Becky completed a sky dive in aid of the British Heart Foundation as Maddie has heart problems, however, Maddie has a range of other problems.

She is autistic, has muscle growth problems, speech and language issues and her auto immune system is impaired. It has taken a long time for a diagnosis and she has spent much of her life in hospital.

Maddie is currently a pupil at Brampton Abbotts Primary School and she will then attend Blackmarston School before moving to Barr’s Court. Becky and Alex said she is a very happy little girl who takes everything in her stride.

As Maddie’s health issues continued they joined a DDD trial and when Maddie turned nine they had a diagnosis of Myhre Syndrome.

Very little is known about the condition but Alex and Becky know that Maddie faces more heart surgery, joint pain along with constant ear infections.

Alex said that the future felt very uncertain until they found a Facebook group for Myhre support with 112 members, where they are able to share their stories and help each other out.

They also want to raise awareness which is why Alex is taking part in this demanding 20 mile obstacle race. For more information or to donate please visit /www.justgiving.com/crowdfunding/alex-wall-2See the full story in this week’s edition of the Ross Gazette, or subscribe to our online edition here