Honor Hocquard CDKL5

Being a growing girl, now aged 6, Miss Honor is starting to get heavier and harder to manourve, a vehicle with a wheelchair hoist is becoming neccessary; unfortunaley there isn't enough funding in New Zealand for everyone that requires a vehicle and or vehicle modifications so now is our chance to help this family raise the money to get a suitable vehicle and then hopefully be able to get the funding to get a wheelchair hoist installed

Honors Story

Hi my name is Honor, I was born on the 25th August 2008, weighing a healthy 7lb 14oz. My Mum & Dad were rapt, I was their second gorgeous baby girl. Life was perfect for them . . .

Little did they know, life as they knew it was about to change forever.

I had my first seizure at 2 weeks old, Mum feared the worst, she had that Mothers instinct something was wrong. Over the next 2 Years I went on to have many tests, including many M.R.I, E.E.G scans, Lumber puncture & blood tests. I also tried many different medications to help stop the horrible seizures but nothing worked.

On my 2nd Birthday I got my diagnosis . . . . I have a gene disorder called CDKL5 (Cyclin Dependent Kinase-Like 5), My parents were relieved to have answers but scared of the future, at this point I was the only one in NZ diagnosed with this debilitating disorder & there is no cure.

Living with CDKL5 for me means, I am now fed by a Mic-key button in my tummy & I will never walk or talk, I have cortical vision impairment & cannot use my hands purposefully. I live a life of medications, doctors & other appointments.

In the first 4 years of life I endured over 9000 seizures & they will always be difficult to control.

Life for me is very difficult as I cannot express how I am feeling, some days I am very unhappy, grizzling for hours & other days I just want to sleep as the seizures really knock me around.

What I do know, is that my family love me to bits & I am very lucky to live in such a caring & generous community that all help to make my life that little bit easier.