IT IS OUR FAVOURITE TIME OF THE MONTH WHEN WE ANNOUNCE OUR CCF FAMILY!!!

(I type “we” but I don’t just mean CCF I am referring to all of our supporters…we can not raise the funds on our own! Without you we would not be able to help these families, so walk tall, head high if you have bought a wristband , attended fundrasing events or helped us in anyway! Hold a special place in your heart for our CCF Families)

We would like to tell you all about OUR THIRD FAMILY  CCF will financially support the parents of this amazing little girl “ KACIE MARTIN”.  Kacie is almost 2 years old and lives with her Mammy and Daddy locally in Wallsend, Tyne and Wear.

Her Mammy and Daddy Nicole and Shaun care 24/7 for their beautiful daughter.  Nicole applied to CCF for help after seeing how we had helped our “February” family on facebook, finances are a major worry for them, they were amazed that there could be help out there for them to take this “headache” away and releive them of their  “finanial worries”   

Please read about this inspirational little girl and her so very strong, amazing parents who really do need our help!

Kacie was diagnosed with Spinal Muscular Astrophy Type 1 at 6 months old, this is the most severe form of the disease.  This little girl will never have the power to support her own head, sit independently, crawl, walk or even roll over.  The greatest threat to her life is her breathing and the fear of respiratory failure! In time as Kacie’s condition

progresses she will need a tracheostomy and  a Percutaneous Endescopic Gastroscopy (Peg Feeding – feeding tube into the stomach)

Kacie needs 24/7 care, she has very little arm movement, is unable to move her positioning and her head needs to be supported like a new born.  She is very prone to catching colds which very often leads to a chest infection then Intensive Care.  Great emphasis is on protecting her immune system to keep her safe. 

This family’s daily routine is centred around the needs of Kacie, she must have Chest Physio atleast three times a day to clear any secretions (as she does not move much this is so very important to keep her lungs clear and breathing well)  Kacie finds her physio very distressing which upsets her (and her parents but they have to keep her safe!) Her physio involves a lot of suctioning and a cough assist machine.

Throughout the day Kacie loves to watch Mr Tumble J he really does make her smile! they very rarely get to go out as a family as in one word it is too “stressful”  Nicole and Shaun worry incase she catches any bugs or if her lung plugs off when outside…in most cases by the time they are ready to go out after organising equipment etc…it is nearly tme for them to go back home for next lot of Physio! Such a lot of pressure for parents to cope with, Kacie can be a little chesty one minute, her saturations can drop, then she is blue lighted to hospital.  These parents have never left their daughter….they watch her around the clock!

At night Kacie uses a BIPAP machine, this helps her breath, but every night is a battle as she hates the mask on her face.  It can take up to 2 hours to settle her.  Once Kacie is ready to go to sleep, her parents night shift starts as they need to turn her over up to 20 times through the night.  They are physically and mentally drained….but they bless each day they have with their daughter and do whatever it takes to keep her safe. http://intensivecare.hsnet.nsw.gov.au/bipap-bi-level-positive-air-pressure

Kacie has a big sister Ava, Ava understands that her little sister  is not well but she doesn’t understand that she will not be with them forever…the effect on the siblings is also so very hard.  Ava spends a lot of time with her Grandma as her little sister is so very dependant on her Mammy and Daddy. 

This family have not had any real “normal” family time since Kacie was born.  Kacie is a very happy little girl, she understands what is going on, her Mammy  wonders if this is a good thing, as things are going to get harder! 90 % of SMA Type 1 children loos their lives before the age of 2.

“It is so hard not knowing if she will see her birthday or christmas, we are scared to plan anything, everyday we love her more”

Kacie’s Mammy

The strain this family is under is so very unfair… it gives us some comfort that we can make a little difference to their worries and let them focus on their absolutely amazing daughter!

I had the chance to meet this little girl and her parents this morning and I know Our Charlie was with me….he is star guiding us…Another beautiful child for you to watch over little legs xxxxxx

(Sarah Cookson)

Thank you all once again, Love Sarah, Chris, Helen, Andrew, Dan, Chris and all of our Cookie Corner Market Team….together with our supporters we will continue to make a difference.xxx