A MOTHER from Hampshire has spoken about her decision to donate her son's organs after he died from a brain disorder at the age of seven.

Debbie Carr, from Lower Kempshott, Basingstoke, chose to donate her son Frankie's organs in May 2021 to allow him to 'live through someone else'.

Frankie, who was born in 2013, was diagnosed with a rare genetic brain disorder; Pontocerebellar Hypoplasia Type 2, at just two weeks old after an MRI scan.

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Debbie with FrankieDebbie with Frankie (Image: Hampshire Hospitals)

Debbie said she was told that Frankie would be 'unlikely' to grow into an adult and his development would be severely limited.

"At the time, I didn't understand the severity of the situation. Every day was a learning day, but we did our best for him. We didn't know how long we would have him for and we want to make the most of his little life," said Debbie.

Frankie attended Saxon Wood School and went on many family holidays, his favourite of which was his birthday trip to Menorca at age five as he 'wasn't in pain' and was 'so happy' according to Debbie.

Debbie, who works as a care coordinator in the oncology department at Hampshire Hospitals, said that during Frankie's life, he was hospitalised around 35 times as his condition caused him to experience seizures and dystonia. 

Dystonia is a movement disorder which leads to muscle spasms caused by confusion with signals sent from the brain.

In 2021, Frankie was hospitalised with a twisted bowl. After an operation, he was put on a ventilator whilst medics tried to manage his condition, however, they determined that his treatment had been 'exhausted'.

Debbie explained that she had developed an advanced care plan with a sister at the hospital about 'what might happen at the end', saying: "As a parent, you're faced with decisions you would never wish to make.

"One question asked whether you would be prepared to donate your child's organs. I thought then, how lovely it would be for him to live through someone else."

After eight weeks, Frankie's parents decided to turn his ventilator off. Before the date, a match was found for Frankie's kidneys after his parents agreed to donate the seven-year-old's organs.

They received a letter from the donation team two weeks after his death, describing where his organs had gone.

Debbie said she will 'never regret' her decision, calling it a 'great comfort', adding: "He has helped people live a healthy life. It made a really terrible decision a little bit better."

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(L to R) George Brann-Liff, Debbie Carr, Rosina Dicks(L to R) George Brann-Liff, Debbie Carr, Rosina Dicks (Image: Hampshire Hospitals)

Describing her son, Debbie said that Frankie 'had an aura about him' that caused anyone to meet him to 'fall in love with him'.

She continued: "Frankie was such a sweet soul. He had the most beautiful eyes and smile.

"He is my inspiration, and I'm so proud of him for saving lives."

Now, three years later, Debbie has urged others to consider organ donation as a part of Organ Donation Week.

The annual event helps to raise awareness about the need for organ donors, and the lifesaving impact that donation can have.

Debbie concluded: "Please consider organ donation, it is a truly fulfilling thing to do. We couldn't save our boy, but we could save others and I would do it again in a heartbeat."

More information on organ donation can be found here