Norwich, United Kingdom, February 2020 Sarah Hutchinson (40) and her son Shae (19), have launched a joint appeal in the hope to save their lives.

The mother and son are both currently battling Alport Syndrome, a genetic condition characterised by kidney disease.

Shae’s mother Sarah Hutchinson (40), said:

“When Shae was around eight years old, I noticed that he would have the TV on loud most times… he would also  misunderstand some words when I spoke to him.  This prompted me to take him to the doctors and ask for him to have a hearing test.

Shae was referred to the local hospital for further tests which showed he did have some hearing loss. Between 6 – 12 months later, Shae had a urine infection which turned his urine a really dark ‘Coke’ colour.”

With further investigation, consultants confirmed Shae was suffering with a condition which affected his hearing, but also his kidneys. Following a kidney biopsy, Shae was diagnosed with Alport Syndrome, a genetic condition characterised by kidney disease.

At the same time, doctors advised Sarah to be tested for the genetic disorder. Results showed she too was living with the same condition.  Over the years Sarah has managed her illness, however with age, the effects of the condition has started to present itself.  In 2019, doctors confirmed that Sarah’s kidney function was below 15% and was therefore put on the waiting list.

Like most parents Sarah’s focus has primarily been on finding Shae the lifesaving transplant he needs, however the reality now is both Shae and Sarah are in need of a kidney transplant to beat the kidney disease.

Individuals living with Alport Syndrome experience progressive loss of kidney function and as a result, Shae is currently living with 17% kidney function whilst his Mum Sarah is living with less than 15%.

Shae Hutchinson said:

“ In October 2018, I received a kidney transplant from my Dad, but due to complications during surgery, the donated kidney didn’t work as it should – and now it’s failing.

I’m lucky enough to do what I love for a living. I have the full support of my team mates, coach and manager. I want to continue living out my dream as a professional footballer, enjoying life with my family and friends however, for this to happen, I desperately need to find a matched kidney donor to beat this.

My illness has progressed much faster than my Mum’s, however; the reality is, she too needs a kidney transplant. My Mum is amazing and likes to just focus on my search for a new kidney, but it’s important for us both to receive one, as we are both living with failing kidneys and only can beat the illness through organ donation.”

If you’re hearing our story and you’re wondering how you can help; help can come from considering to become a living kidney donor as well as simply sharing our story amongst your family and friends.

I also encourage individuals to seek out information on joining the Organ Donor Register by contacting charities like ACLT (African Caribbean Leukaemia Trust), a charity which raises awareness on the lack of African Caribbean people on the donor registers and an organisation who are supporting my Mum and I to raise awareness on our appeal in the hope we can both find matched organ donors.

Ultimately, I encourage everyone to join the Organ Donation Register to help save the lives of others in desperate need of a kidney transplant after their death. However, my wish is people out there will step forward to become a living kidney donor for my Mum and I, so we have a good chance to beat this.”

Despite the organ donation law changing to an ‘opt out’ system in the Spring, individuals can still join the Organ Donor Register now, to make their wishes known to their family members in the event of their death.

For more information on how you can become a living donor to help save the life of Sarah and Shae, please click here.

To find out how you can join the Organ Donor Register, please click here.

Should you wish to talk through anything, please call a member of the ACLT team on 020 3757 7700.