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Party for a cure with the Kai Hatley Foundation

Michelle Swadling

Every parent remembers the joy and excitement when their baby takes their first steps. The now four-year-old Kai Hatley was three when he took his, and it was an especially momentous moment for his Mum, Caitlan.

“It was incredible…When the Doctor told me there was a chance Kai may never walk, I just always had this flame of hope inside me,” says Caitlan Hatley. “I was like, nup, he IS going to walk, I know he’s going to walk.”

Kai is a fighter. He suffers from Mecp2 Duplication Syndrome, an extremely rare genetic disorder discovered only 10 years ago in 2005. It mostly affects males and is a progressive neurological disorder. Children who suffer from this disorder may never walk. Other symptoms include low muscle tone, intellectual impairment (with little to no speech) and recurrent respiratory infections. Fifty per cent of children who suffer from Mecp2 Duplication Syndrome will not live past the age of 25. For those who do, there is little quality of life as their brain deteriorates.

“Kai is practically non-verbal,” Caitlan says. “He has a couple of different words and he has his way of communicating with us. They’re (Mcep2 Duplication Syndrome sufferers) prone to seizures and neurological regression.”

Kai’s struggle was evident immediately, when he was born not breathing and his heart rate was very low.

“We stayed in the hospital for a week because he kept turning blue and stopping breathing. No one could figure out what was happening. That was the first sign something wasn’t quite right.”

Kai suffered from reflux, low muscle tone and difficulty swallowing.

“He had a nasal-gastric tube put in to help him feed. He was only 2.5 kilos at birth and we were actually admitted back to the hospital when he was six weeks old and only 3 kilos. That’s when the Doctor were like, this isn’t good.”

Caitlan describes being “a first time mum with a poor little baby [and] no idea where to go”. Months followed as they searched for an answer. Kai went through many tests, hospital stays, surgeries and several diagnoses. A chance meeting with a genetic counsellor led them to the correct diagnosis. Kai undertook genetic testing and the results came back with Mecp2 Duplication Syndrome.

“It was a shock—a huge shock.”

Caitlan explains why they created The Kai Hatley Foundation.

“We went to Queensland to see some friends over Christmas and we went to visit my brother’s memorial site. I had a brother who passed when he was six and now they believe he also suffered Mecp2 Duplication Syndrome,” reflects Caitlan.

“He passed because of respiratory complications during surgery. We visited his memorial and I had never actually been there. There was just an overwhelming power. I could feel the emotion that my parents would have felt nearly 30 years ago, standing there saying goodbye to their little boy. I just thought to myself ‘I could never do this’. I could never say goodbye to Kai like that. And I could never live with myself after that. So I just thought to myself I have to do something.”

The Kai Hatley Foundation is raising money through the 401 Project to fund research that could find a treatment or cure for Kai, and every child that suffers from this debilitating disorder. Researchers need just $180,000 to begin trialling a drug that will reverse Mecp2 Duplication Syndrome. And there are number of ways you can help.

Party with Kai

Kai will be celebrating his 5th birthday with a huge party on Sunday 31 May at John Dunmore Lang Place (Kind Edward’s Terrace, Parkes) from 11 am to 2pm. It will be a fantastic day for the whole family with reptilian displays, a jumping castle, inflatable slides, glitter tattoos, face painting, a dance party marquee, and refreshments. Local businesses The Canberra Reptile Zoo, The Gecko Gang, DJ Rawson and The Canberra Lion’s Club are lending their support. And you’re invited!!!

Pick up a good book

Kai’s grandfather, Paul Longley, has written and dedicated his autobiography to The Kai Hatley Foundation. Not a Real War is the story of Paul’s experience in the Navy with the 1993 United Nation’s Mission in Somalia. All profits (100%) are donated to the Foundation. Not a Real War can be purchased here online.

Dig deep

Donations can also be made on The Kai Hatley Foundation website or The 401 Project

The essentials

What: Kai’s 5th birthday party
When: 11am-2pm, Sunday 31 May
Where: John Dunmore Lang Place, Kind Edward’s Terrace, Parkes ACT
Facebook: Find them on Facebook

There will be jumping castles, a giant inflatable slide, glitter tattoos, face painting, reptile displays, a sausage sizzle, a coffee and pastry van (My Sweet Alice), Moonlight bus rides, a dance party and so much more!

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Michelle Swadling

Michelle worked in radio before moving to Canberra several years ago. She loves the opportunities the city offers, whilst still having that "country town feel". Michelle's life is a whirlwind of full time work, studying and raising two active little boys with her husband. More about the Author

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