NDC CHRISTMAS CHARITY & FANCY DRESS 2017

Christmas is a time for family, fun, giving, sharing and reflection.  At NDC we appreciate all the cards and gifts we have received over the years!  For the last five years we have asked parents and pupils, who would normally send us cards and gifts, to donate to a charity instead. 

This year our charity of choice is:

‘Nicole Rich Foundation’

Charity No: 1084908

 

We continue to support the family and pray for a positive outcome for all.

During the last week of term Monday 11th December – Saturday 16th December, pupils can come to class in fancy dress or Christmas jumpers. There will be collection buckets at NDC Reception for any donations you feel you would like to give to this wonderful family! 

The Rich Family Story:

Our two beautiful, precious daughters have recently been diagnosed with Batten Disease, an extremely rare neuro degenerative disease. Nicole was diagnosed in September 2016 & Jessica, 3 months later in December. It is the most horrendous disease which takes away their ability to walk, talk & feed themselves, as well as taking their sight. Children with CLN2 type of Batten, which is the type Nicole & Jessica have, are not expected to live into their teens.

In January 2017, Nicole began enzyme replacement therapy at GOSH, which has given us hope, when we once had none. The treatment slows down the progression of the disease, but it is not a cure. A cure is out there, we just need to find it. We will be travelling down every fortnight for the foreseeable future for the treatment. 

In a significant step forward in the Batten Disease Community and we are so proud and incredibly grateful that Jessica has this opportunity to receive this treatment at only 1 year old. The eyes of the medical world are upon Jessica to see if the treatment is given to a child this young, before any symptoms have started, could prevent them from ever starting in the first place?  We are hoping and praying this will be the case and we are full of positivity for the future.

But we will not let this bring our family down. Our children, Nicole, Jessica & our beautiful son Louis, need their Mammy & Daddy. We continue to live each day with happiness, love & positivity in our hearts. We focus on things within our control & one of these things is raising awareness of Batten Disease. It is a widely unheard of condition, yet it is the most brutal condition for anyone to have to endure, never mind a child.

So we have teamed up with the Batten Disease Family Association (BDFA) to work together to help raise awareness. All fundraising donations will be divided between the BDFA supporting medical research to find a cure, as well as providing help towards the ongoing cost of the care & support for Nicole & Jessica as their needs change.