Kai and NeilNeil’s Story

A letter from Beam’s Parent, Neil

Hi Everyone

My name is Neil, I am the father and full time carer of Kai . I gave up my career in Business Management 15 years ago to take up my role as full time carer for Kai.

Kai is diagnosed with Type 2 Kabuki Syndrome, which is a rare genetic disorder and causes more severe symptoms in boys. Kai has profound and multiple learning difficulties, he is non-verbal, requires liquids via a feeding tube and needs help with all personal care. As a carer this is a full time job, that and trying to also be a parent.

Kai has been using We Are Beams for the last 15 years, first accessing Holiday Clubs and Kids Clubs and for the last 9 years has been at Dragon’s Retreat, Beams overnight respite care. Sadly Kai will be 19 in October, so we will be moving to another chapter in his life.

What is it like being a parent to a disabled child?

Well, it is like running a small business or it feels like it, you need to be an accountant, solicitor, human resources, be good at negotiating, be resilient, fight for everything to get what you want from all the brick walls put in front of you, be good at time management. You can also throw in being a doctor, counsellor, entertainer and teacher! As well as being a parent.

However taking all of this into account, I would not change it for the world. Kai is an amazing little guy, he is cheeky, he has a wicked sense of humour and he is very loving. For all his ailments I am very privileged to be a part of his life.

I am also very proud to be a part of We Are Beams, not only as a parent but also as a trustee for the last 12 years. Being a parent, We Are Beams has been invaluable to my family and also to many other families in providing Family Advice, Short Breaks, Respite (Dragons), Payroll Service, Direct Payments and Support Brokerage.

But none of these services would be available without the kindness of the local community. Your donations, your support, is invaluable to us, so as a parent I appeal to you to support this great local charity. Just £5 a month would make such a difference to them.

You can become a Friend of Beams with a regular small donation by clicking HERE or by calling Marie in the office on 01322 668501 option 5 or by E:marie.moorey@wearebeams.org.uk