Story
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Some of you will know my back story by now but for those reading for the first time; In February 2023 we welcomed to the world our beautiful daughter Verity. Shortly after she was born we were informed that she had Down Syndrome and Atrioventricular Septal Defect.
An atrioventricular septal defect (AVSD) is a heart defect in which there are holes between the chambers of the right and left sides of the heart, and the valves that control the flow of blood between these chambers may not be formed correctly. She will at sometime before the age of 3 years require open heart surgery.
At first there was a mix of emotions, but one thing never wavered and that is our love for her. She is amazing and copes with life unbelievably. Despite all the appointments, jabs, scans and check ups, Verity has the most amazing smile and attitude to life.
In September 2023 I completed the Thames Path Challenge in aid of the Down Syndrome Association - 100km (62miles) continuous. I was hoping to complete the challenge within 26 hours but my time ended at 31 hours. The challenge was gruelling. It was the hottest September day on record at 33 degrees, cramps kicked in early and hydration was a massive issue. I ended up with infections in my feet, blisters and lost nails. I said the NEVER AGAIN!!
A couple of months on and I started thinking, I'd like to better my time but also raise money for a local charity that has been close to our hearts. DSGN (Down Syndrome Group Northampton) arrange a monthly meet for parents and children, arrange film days, silent discos and many fun activities for people with Down Syndrome and their families. This gives new parents a great platform to learn and children to make lifelong friends within Northampton.
The group is fully self funded and can only continue with money raised by it's members and supporters.
Rather than sending Xmas cards why not make a donation to this wonderful group. All the help is appreciated and would really spur me on to take on this next 100km (62 mile) challenge!!
Here's a few facts about Down Syndrome:
People with Down syndrome are all unique individuals with their own personalities, family backgrounds and preferences that make them who they are.
• Although the chance of a baby having Down syndrome is higher for older mothers, more babies with Down syndrome are born to younger women.
•Down syndrome is caused by the presence of an extra chromosome in a baby’s cells. Down syndrome usually occurs because of a chance happening at the time of conception.
•Down syndrome occurs in all races, religious and economic situations.
•Down’s syndrome is not a disease. People with Down syndrome are not ill and do not “suffer” from the condition.
•People with the syndrome will have a learning disability. The learning disability affects a person’s ability to learn, it does not mean they cannot learn.
• Like most of the population, people with Down syndrome learn at school, have interests, hobbies and talents, have friends and relationships.
•Today the average life expectancy for a person with Down syndrome is between 50 and 60 with a small number of people living into their seventies.