#hope4Zayn

When we look around at people near us we think that everyone is blissfully happy and life is going as smooth as can be for them. There is a falseness of self suffering that we all tend to feel. "Why is this happening to me?" is the one thing we always fall back on when any obstacle comes our way. This is not the truth of reality. In reality people have mastered the key to courage and bravery. Bravery is not saying one is unafraid, bravery is acting and overcoming fear through hope and belief. Everyone is suffering in their own course of journey we call life, but the driving course for every single day, or every drying hour is that flickering candle in the pitch black night called Hope.

Hope for a better tomorrow, Hope for ever lasting happiness and Hope for a Miracle. 

Many people define bravery as war soldiers or bull fighters, indeed they are, however in everyday life we meet so many "ordinary" heroes and heroines that are or have battled so many hardships or obstacles and in the process made this world a better place. 

Today's heroine is Nadia Slatch.

Here is a story of a woman who's battling the hardest struggle a mother can go through. Here is her story about how she came to learn of her son suffering a rare disease, how they are dealing with this reality, what she is doing for awareness and charity, and how her faith and hope will never waver, but remain strong.

When I found out I was expecting naturally I was over the moon and after a normal pregnancy, and birth with no complications I started to enjoy life with Zayn. It was when Zayn was 4 weeks old I noticed he was considerably yellow all over so went to see the GP who referred me to Milton Keynes hospital immediately for tests, after impatiently waiting for hours was informed his bilirubin levels were high & I was admitted into hospital with him for a few days for further tests. After a scan was complete it showed Zayn had an enlarged liver & spleen & thought it was a liver function problem. 

Living with the unknown was very difficult but I always remained positive and after being transferred to the liver unit at Birmingham children's hospital I knew the specialist would get to the bottom of a diagnosis for Zayn. It was on the 7th February 2014 when Zayn was 3 months old that our world came crashing down & we were told Zayn had Niemann pick Disease type C, we were upset of course and in complete shock. 

Niemann pick disease type C is an extremely rare metabolic condition causing a breakdown in the central nervous system. A build up of cholesterol causing structural & functional damage in cells & tissue. 

Once the neurological side deteriorates the outcome is loss of speech, loss of motor skills, seizures, dementia, stop swallowing and eventually lose their lives. 

It is fatal and children with this disease don't usually live beyond early childhood. 

Unfortunately there is no cure at present. 

As this disease is extremely rare we were told with Zayn current status he may not live beyond 2, that's the hardest thing for a mother to hear. We pray and live in hope everyday but at the same time the harsh reality is we may never see Zayn go to school, graduate, get married or have a family of his own. I would trade my life in any day if it gave Zayn a chance to live a happy normal life, that's all any mother wants. 

There are currently only 75 reported cases of NPC in the UK & the bizarre thing is 2 others are in my home town of Milton Keynes. Hollie and Joshua give me hope as they are older than Zayn and are doing very well. 

I have set up a fundraising page called 'hope4Zayn' which I'm hoping people will take the time & donate. Donations go direct to the Hope for Hollie Foundation, they are a charity that supports individuals living with NPC and provides grants for specialist equipment as well as aiding research with Niemann Pick UK into finding a cure. 

Zayn is now 20 months old & even though he is smiley & happy he can't do normal things children his age can do like sit up, crawl, talk or walk. 

I'm going to do whatever it takes to give Zayn and other children fighting NPC a chance. 

"Our children only have a childhood to live a lifetime"

Zayn's story is indeed one filled with heartache, but on hearing Nadia's story, rather than being saddened deeply, I was filled with a sense of positivity and  optimism; grounds for hope. There are so many people that suffer all sorts of different diseases ranging from Cancer to NPC, you would think that everyone would have a sense of utter despair and self pity, but these patients are so full of happiness and positivity, and most importantly they are very grateful for everything they have been given in life.

 Let us today join in prayer for #hope4zayn, keep this trending, spread the awareness, donations and more information may be found here, learn from Nadia's bravery, sanguineness and positivity and in the process be thankful for everything we have been given in life.