October 1st 2024.
Imagine living with a rare form of dementia in your 20s. This is the reality for two brothers, Jordan and Cian Adams. At the ages of 28 and 23, they were both diagnosed with Frontotemporal Dementia (FTD), a condition caused by nerve cell damage in the front of the brain. This type of dementia typically affects people under 65, but the Adams brothers' symptoms began in their early 40s, giving them only a short time to live.
To make matters worse, there is currently no cure for FTD. This is a devastating truth that the brothers and their family have had to come to terms with. Their own mother, Geraldine, also suffered from this condition and passed away at the young age of 52 in 2016. In her final days, she was unable to speak or move on her own, and did not even recognize her own children. It's a heartbreaking situation, but Jordan and Cian are determined to find the positives in their circumstances.
They both share a common goal: to make the most of the time they have and raise awareness and funds to fight this terrible disease. As Jordan expressed, "Our lives may be shorter than most, but this has made us both determined to make a difference in the world." His younger brother, Cian, echoed these sentiments, saying, "A million times over I wish this had never happened, but it has given us a chance to make a difference and find meaning in our lives."
Despite the challenges they face every day, the brothers are determined to make a difference. They have already raised an impressive £150,000 by running the length of the UK, starting from John O'Groats and ending in Cornwall. Their goal is to reach £1million by the end of their journey. It's a difficult feat, but as Cian shared, "Every day we think, 'Not again!' But we know we can't give up. There's a really good reason why we're doing this, and that's what keeps us going."
Their motivation comes from their mother, who loved to cook a big chilli con carne and have their cousins over on a mid-week night. She also had a love for R&B music, often blasting it in the car on their way to school. It's clear that she was a special person in their lives, and they are honoring her memory by raising funds for Alzheimer's Research UK.
The Adams brothers' older sister, Kennedy, did not inherit FTD like her brothers. However, she still feels the impact of their diagnosis. Cian shared, "I think in many ways, it's just as hard for her as it is for us. We are all so close, and she knows she will have to watch us go through this, whenever it may be." They are also aware that the gene could be passed on to their future children, which adds another layer of complexity to their situation.
In light of this, Jordan felt it was important to be transparent with his wife, Agnes, about his condition. She shared, "Because family has always been so important to Jordan, he wanted to make sure that whoever he met knew what the future held and what options there were." They are currently exploring the option of IVF to increase the chances of their baby being healthy, after Agnes became pregnant with a baby who had the gene and they made the difficult decision to terminate the pregnancy.
The Adams brothers' story is truly inspiring, and their determination to make a difference in the face of such a devastating diagnosis is admirable. If you would like to support their cause, please visit justgiving.com/fundraising/FTDbrothers. Every donation counts towards helping them reach their goal and finding a cure for FTD.
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