***OUR FAVOURITE TIME OF THE MONTH!! PLEASE READ ABOUT OUR OCTOBER CCF FAMILY ****

The Charlie Cookson Foundation has reached its *1 Year Anniversary* A huge milestone for us…every day we are blown away by the support we receive. It is thanks to all of our supporters, donators, and volunteers that we are able to change the lives of these inspirational families.

The families we help have to watch their sick child 24/7, they live with the worry that they may miss signs of them aspirating, choking, fitting, or even stop breathing. Their lives were turned upside down and hearts torn apart when they were taken into ‘that’ room and told your child is very vulnerable and has a life limiting condition.

They have to take in all this information, then the parental instinct takes over they want to protect their child, they want their child to be with them as long as possible, they want to fit in being a loving parent in between being their Nurse, Physiotherapist and Carer then they are expected to somehow think about how do they financially survive?

These parents or parent have to give up work or massively reduce their working hours, their carers allowance stops when their child is admitted to hospital they have the same household bills but no wage. This is where we help!

Our 10th CCF Family lives in London, this amazing little boy Frankie De Silva is the son of Nicola Lawrence. This beautiful and brave 2 year old boy is cared for around the clock by his mammy who is also Mammy to Frankie’s older brother Louie Aged 4. Please read their story they have been through and are still going through so much heartache.

Nicola gave birth to a beautiful baby boy on the 15th February 2012 at 6 weeks old her world fell apart when he was diagnosed with a life limiting condition called Infertile Osteopetrosis this condition is so rare that he is the only child in the UK suffering this condition. This condition causes the bones to thicken and bone marrow failure. Children with this condition fail to thrive, have growth retardation, and suffer increased morbidity. As a result of this Frankie needed a tracheostomy to survive, the bones in his nose would thicken so much to the point of not being able to breath.

Desperately heart breaking for a Mother to list the following..what her little boy suffers;

• Osteopetrosis

• Restrictive Lung Disease

• Recurrent Lower Respiratory Tract Infections

• Thickened Cranial Bones

• Possible raised intercranial pressure

• Airway Occlusion – Tracheostomy

• Bone Marrow compromise

• Seizures

• 4 Weekly blood transfusions

• Hearing and vision loss

• Severe developmental delay

Nicola had so much to take in…after only 6 weeks of her little boy being born she was faced with such devastating news. From this moment on she became Frankie’s full time Nurse and desperately wanted to just to be his Mammy, she looked at her older son Louie and wished so much for Frankie to be the same. She is an amazing Mammy to both of her children, and Louie is a big brother who showers his special little brother with all his love.

Nicola has been through so much heartache she spoke about the time she put a coat on Frankie and his arm broke, she wanted to cuddle him and make it better but she knew this would give him more pain. Positioning is so important for Frankie he is unable to weight bare and needs to be fully supported at all times and turned several times through the night. He has is unable to have a Percutaneous Endoscopic Gastrostomy (PEG) as he is too vulnerable for surgery so he is fed through an NG Tube through his nose into his stomach. Nicola administers all of his feed along with his regular medication.

The last two Christmas’s have been spent in a hospice, where Nicola was told to expect the worst, There is only so much that can be done for Frankie he will never be put on a life support machine as his bones are so weak the pressure from the machine to inflate his lungs will break his ribs. Christmas time should be such a special time for families, Nicola and her family have spent the last two years at Frankie’s bedside, at this point I can’t help but feel for his older brother Louie.

Nicola tries so hard to be the Mammy she needs to be to both her boys, the Doctors have been amazed at Frankie’s strength pulling through the last two Winters, they keep telling Nicola that it is very unlikely that he will make it past his third birthday.

Nicola is struggling financially to give her boys the Christmas they both deserve, a lot of her money is spent on new clothes and bedding for Frankie being NG fed means a lot of ruined soiled garments which means more expense. They have a lot of travel expenses due to Frankie’s hospital admissions which are becoming more and more frequent. Sadly Frankie’s condition is deteriorating; his seizures have increased and he is requiring more medication and is on very strong pain relief to keep him comfortable.

The Charlie Cookson Foundation will help this family have a Christmas they will treasure for a lifetime. With your help and support we will take away the stress of Nicola’s bills for a period of three months which will allow her to spoil her two amazing little boys…make those memories she desperately wants to hold onto when that time arrives.

Quote from Frankie’s Mammy Nicola;

When I was told my family had been accepted I felt like a weight had been lifted off my shoulders now thanks to Charlie Cookson foundation I can look forward to the most perfect Christmas with my boys.

Please watch this episode of Gareth’s All Star Choirs for Children in Need, 15 minutes in you will see this amazing little boy and his Mammy. http://www.bbc.co.uk/…/b04…/gareths-all-star-choir-episode

Our Charlie….a year we have not been able to see you, but we know you are with us every day bringing us these amazing families. We are so proud of you little legs, keep flying high, you have another brave little boy to look after from up there! We miss you more everyday blowing you butterfly kisses to catch xxxxxxxx

Well done to everyone who has helped make this happen!