Ipswich teenager Keigan Curtis, who has Stickler Syndrome, has childhood dream to visit Japan – as mum sets up fund-raiser

Ever since he was a little boy, Keigan Curtis always wanted to visit Japan.

Until age 13, Keigan, from Ipswich, was fully-sighted, until we woke up one day with blurred vision.

After surgery, he lost vision in his right eye, and soon his left eye followed. He was eventually diagnosed with Stickler Syndrome, a rare genetic condition affecting connective tissue.

Now 17, Keigan’s family do not know how long it will be before he is fully blind – and his mum, Ann Curtis, wanted to make a childhood dream of his come true before it was too late.

Two weeks ago, Ann set up a GoFundMe to raise £38,000 for an all-expense-paid trip to Japan, scheduled for September 2025, which can be found here.

Ann said: “Ever since he was young, Keigan had always wanted to go to Japan. He was enamoured by what he saw as the two worlds it represents – all the technology as well as the hidden Japan, and how those two cultures live side-by-side. He’d always wanted to see it.

“His vision is fragile and is getting worse, especially in the last month. I thought to myself that I have to do this for him, I have to make his dream come true.

“I want to create what memories I can before the inevitable happens.”

Ann said several people in their family had Stickler Syndrome but Keigan bore the brunt of it.

Their 16-day trip will include a tour of Tokyo, sightseeing at Mount Fuji, gold leaf making, exploring Kyoto and a visit to Hiroshima.

In addition to the fund-raiser, Ann said she had approached both Ipswich Town Football Club and Ed Sheeran to see if they would be willing to donate or raise money.

Ann said Keigan masks the anger at his condition well, never blaming himself.

However, she feared it would soon rob him of his hobbies, such as playing Warhammer with his friends or seeing Ipswich Town play.

“We want him to be as independent as possible,” Ann said. “He’s currently practicing using a cane, and he’ll never be able to drive. It also makes his hobbies difficult.

“As his mum I can’t imagine what that’s like, only being 17 and having very limited vision.”

Ann hoped to raise awareness of the condition and the struggle Keigan faced every day.

As they do not know when he could lose his sight completely, it is difficult to plan ahead, she said.

Despite his condition, Keigan hopes to attend university to study sociology.

Ann added: “Keigan’s illness won’t kill him, but it is very life limiting.

“The next hurdle will be getting further support for him.

“I don’t expect money from everyone and I know times are tough, so if people could read and share, that would be fantastic.

“This is the one thing I feel I have to do for Keigan.”