Maddi Runs Junior South Run Despite Terminal Illness

Enter the Simplyhealth Junior and Mini Great South Run at: Greatrun.org/South

A nine-year-old girl who has been diagnosed with a terminal condition is to take on a running event to raise awareness to find cure for the disease.

Maddi Crockford-Reid, from Portmsouth, was diagnosed with Sanfilippo Syndrome (MPS-III) in August 2015, which is an extremely rare genetic condition that affects only 4% of people in the world.

The condition means that Maddi is missing an enzyme, meaning that every cell in her body is affected and eventually she will lose her ability to walk, talk, see and hear.

Most children with the condition do not live to see the end of their teenage years and there is currently no known cure.

Maddi’s parents were told that over time, she will also start to experience seizures and all that they can do is manage her symptoms before she becomes immobile the loses her battle to MPS-III.

Her family only discovered that Maddi had the devastating condition after seeing a pediatrician when they applied for funding as she was falling behind in school.

The devastating news inspired her mum Shelly and Dad Spencer and sister Jorden to begin a campaign called Miracle 4 Maddi, in the hope that as her daughter’s condition deteriorates, they are able to find a cure.

Over 1,500 people have joined the campaign, which aims to raise funds to improving Maddi’s lifestyle and research into finding a cure for the condition.

As part of the fundraising campaign, Maddi herself will take on a 2.5k run with a group of friends at the Simpyhealth Junior and Mini Great South Run on Saturday 21 October.

The children will be part of a huge group of fundraisers across the Simplyhealth Great South Run weekend in the city, with Maddi’s Dad also taking on the 10 mile.

Shelly, 45, said: “Two years ago today our lives changed forever when Maddi was diagnosed with Sanfilippo Syndrome.

“The only words we physically remember the consultant saying were ‘ultra rare’, ‘life limiting’, ‘no cure’, ‘teenage years’ and the advice of ‘go home and cuddle your beautiful little girl tight’ as the tears rolled down our faces.

“The disease is terminal and will eventually cause Maddi to lose her ability to walk, talk, see and hear.

“Many children with this condition don’t see the end of their teenage years. As it stands medically there is no cure and we can only manage her symptoms as and when they occur.

“The time will come when her vision will deteriorate, she will become hard of hearing, won’t be talk and she will become immobile.

“We hit the internet looking for the cure that we hoped someone had missed but all we found were other families who were in the same boat as us or families who had already watched their children go through this devastating fate.

“We cannot change this but we can make life as good as possible for her. We we will be able to manage her symptoms in a way that maintains a good quality of life for Maddi.

“Most of all we hope to be able to fundraise to fund research into finding a cure. This is when Maddi decided to enter the Simplyhealth Junior and Mini Great South Run.”

Maddi will join over 2,000 children for the Simplyhealth Junior and Mini Great South Run, which is the biggest children’s running event in the south.

Maddi will be taking on the Junior course, which starts and finshes in Clarence Esplanade in Southsea, with her friends Oliver King, Mollie Derry, Mya Gillespie, Lauren Rowsell and Chloe King.

Sister Jorden is also taking on the Simplyhealth Great South 5k on the same day with family friends Sian Nash, Gindi Cassie and Rhiann McHenry.

Her Dad Spencer will run the 10 mile event the next day along with friends Neil Bickle, Dean Gillespie, Scott King, Brian Rickard and Andrew Bedford.

Together, the team hope that they can also help Maddi enjoy life to the full and adapt their daily lifestyles to make her’s a better one.

Shelly, who works as a store manager, added: “It was such a shock to us all when Maddi was diagnosed as the condition isn’t something any one had ever heard of and it has such a devastating impact.

“Maddi is such an active girl at the moment and so doing the Simplyhealth Junior Great South Run was something that I knew she would love to do.

“At the moment it seems hard to believe that the most horrendous thing will happen to her but that is the reality.”

Visit the Miracle 4 Maddi campaign here.

Support the family’s funderaising at the Simplyhealth Great South Run here.

Enter the Simplyhealth Junior and Mini Great South Run at: Greatrun.org/South