THIS IS WHY WE DO WHAT WE DO…..SORRY WE ARE BEHIND IN TELLING YOU ALL ABOUT OUR APRIL CCF FAMILY BUT THIS INSPIRATIONAL LITTLE GIRL IS WORTH THE WAIT!

OUR FOURTH CCF FAMILY

We will financially support the parents of this amazing little girl “Maddison Sherwood”.  Maddison is 5years old and lives with her Mammy, Daddy and her 3 other siblings.  Maddison is the youngest sister of brothers Harley 9, Jayden 6 and sister Lacey 12, who live in Loughborough.

Maddison was diagnosed at an early age with SMARD (Spinal Muscular Atrophy with Respiratory Distress - Type 1, the most severe form) This is an inherited neuromuscular disorder involving the death of motor neurons in the spinal cord which leads to atrophy of body muscles.   In layman’s terms… the  nerve cells in the lower part of the brain and spinal cord break down and die, when this happens the brain stops sending signals to the body’s muscles.  This is very sadly a life limiting condition.

When Maddison’s parents Lidia and Jamie were told to prepare for the worst back in May 2009, they refused to give up on their little girl, their love, care, dedication and nursing helped her evenetually get home for Christmas.  Maddison’s mammy recalls how terrified she was bringing her home, her and her husband did not know what was going to happen!  They feel blessed everyday that Maddison is still here.

Maddison requires 24/7 care by two people at all times, this has resulted in both parents not being able to work.  She is ventilated via a tracheostomy owed to her diaphram being paralysed, she will not survive without a ventilator.  Maddison has a very weak cough, this means that she needs her chest clearing 3 times a day, this involves a cough assist treatment along with her intense physio.   Maddison has been provided with carers as opposed to respite this allows her to be able to attend school, always being accompanied by two medically trained professionals who can deal with any emergencys Maddison may present, the main one being her tracheostomy becoming blocked . 

Life can be very difficult for Lidia and Jamie as they try their very best to keep the “norm” going for their other three children who absolutely adore their sister.  A day out for the family can be very stressful as Maddison needs all of her equipment; 2 ventilators, suction machines, oxygen,  trachy box and an Ambu Bag for manual resuscitation, an outsider looking in would certainly not see this as the norm…but it has become the norm for this amazing family.

Both Lidia and Jamie are trained to deal with Tracheostomy changes, they live with  the fear of this happening, that is why there is always two persons with Maddison, one to get help and the other to deal with her needs. This little girl is truly amazing along with her family who “just crack on” with their lives as they believe they are the lucky ones as they have Maddison.

A normal day would involve Maddison’s medical needs being addressed first, she would have her nebuliser, cough assist then her stretches and intense physio, then she would get ready for school.  Throughout the day her carers would attend to her needs and perform her physio whilst at school. Then its home time to do it all again, rest/play time then ready for bed, when her parents sleep with one eye open!

This beautiful and inspirational little girl is doing so well, she is so bright and cheerful, she really is amazing.  At 5 years old Maddison is certainly showing her determination, strength and will power, her condition effects just 50 people worldwide and 95% of youngsters born with the illness do not live past 18 months old. This little girl is leading the way!

On top of their normal household bills Lidia and Jamie also have their other three children who have their hobbies and interests to enjoy, this is all added expense on top of hospital visits, parking and petrol.  With less money coming as they have both had to give up work owed to the 24/7 care they give there daughter their monthly bills are a real burden! 

It is our absolute pleasue to help these parents, to take the worry away for 3 months is a huge weight off their shoulders,

Quote from Maddison’s Mammy;

“What the Charlie Cookson Foundation have done for us is truly amazing, with the little spare money we have thanks to CCF taking care of our financial burdens we are going to spend on some family days out, making beautiful memories.  We are extremley overwhelmed by the kindness shown.  Thank you all.

Huge thank you  to all of our suppporters, our CCF  Trustee’s our Market Volunteers, our Cookie’s Corner Volunteers, to everyone that has helped towards our fundraising events, if you have bought a ticket, a wristband, a hoody, a bargain….or donated!!  This is all your doing, these families really do need a break….together we will continue to make a difference.

Much love to you all xxx