****OUR FAVOURITE TIME OF THE MONTH!! PLEASE READ ABOUT OUR 11TH CCF FAMILY ****

The Charlie Cookson Foundation has brought financial relief to 10 inspirational families all over the UK. With your help The Trustees of the Charlie Cookson Foundation are privileged to announce our November 2014 family.

Kelly Morgan and Rikki Peckett live with their two daughters Kaye Aged 5 and Winnie just 6 months old in Surrey. As you read about the life this family has, their daily battle, the strain it has on their heart, mind, and body it will tug on your heart strings.

Our help will allow this inspirational family have a better quality of life, this is our aim to raise awareness of the daily struggles these families face and to help them the best way we can, easing the weight of their financial burden.

Kelly gave birth to Kaye in November 2009, Kelly and Rikki were so happy…but the worry began to creep in when results were coming back not quite right. Her blood sugar was very low which raised questions as to what the problem could be. She was picking up infections and was transferred to SCBU to keep a close eye on her. Kaye endured a lot of scans, blood tests and MRI’s…they got answers quite quickly but this did not make the situation any easier as they knew their beautiful baby girl would never have ‘normal’ life and in actual fact neither would they. At 4 weeks old Kelly and Rikki were told the following;

To list the medical problems of their beautiful child is heart breaking for any parent/parents. Here is the medical information…it all seems very cold and factual but when you read further about their day to day life it becomes so much more real.

Kaye suffers from the following conditions;

• Septo-Optic Dysplasia

This condition is traditionally defined by three characteristic features: underdevelopment (hypoplasia) of the optic nerve, abnormal formation of structures along the midline of the brain, and pituitary hypoplasia. It is a rare condition affecting around 1 in every 10,000 births, with boys and girls affected equally.

• Panhypopoituitarism

This is the loss of function in an endocrine gland due to failure of the pituitary gland to secrete hormones which stimulate that gland's function. The pituitary gland is located at the base of the brain.

• Diabetes Insipidus

During the day, your kidneys filter all your blood many times. Normally, most of the water is reabsorbed, and only a small amount of concentrated urine is excreted. DI occurs when the kidneys cannot concentrate the urine normally, and a large amount of dilute urine is excreted.

• Developmental Delay

• Blind

• Joint Hypermobility

• Epilepsy

This is the first occasion we have had where the family are so desperate that their Social Worker has completed our application form as the Professionals as well as the parents are seriously worried about their living conditions and the effect it is having on their quality of life!

This family lives in a one bedroomed flat located on the second floor of a block of flats they have to walk four flights of concrete stairs as there is no lift. Kaye weighs 18 kilos and is a dead weight as she is unable to support herself. Kelly is of small stature and even though she had a caesarean section in May, she continued to carry Kaye up and down these stairs which is causing her serious back issues. Rikki Kaye’s Father has had to give up work to help with this lifting.

Kaye has high care needs through the day and the night.

As Kaye suffers from Diabetes Insipidus she urinates a lot and can go through 10 nappies a day and the same at night. She is under Great Ormond Street Hospital for her care and they believe that this problem will not improve. Kaye is awake several times through the night along with their youngest child the parents as well as the children are exhausted. This has been their life for 5 years and they are extremely drained, all four members are sleeping in the same room. They have a mattress in the sitting room to enable one parent to try and get some rest.

Kaye is growing out of her cot and has been assessed as needing a special bed, but there is no room for this along with a cot for their six month old. The bedding has to be changed every day for Kaye’s bed. They do not have a tumble dryer as they cannot afford to run one. They either dry the bedding over the doors or the grandmother helps them to try and keep on top of it. They have had to replace their doors as they were ruined from all of the wet covers.

Getting out and about is such a hard task for them as a family, some days this is just impossible. They do not drive and have to rely on professionals to assist with transport to and from hospital. Kaye travels in a buggy, which is kept at the top of the four flights of stairs, she should have a wheelchair but this was sent back due to the heaviness of the chair, Kelly and Rikki, couldn’t physically lift it up and down the stairs plus it was too much of an expensive piece of NHS equipment to be left outside. The fact that Kaye is in a buggy is no good for her posture and overall support.

Kaye will never crawl or walk, she can kneel and sit unaided once she is put in position, but this is her limit. She uses a standing frame for short periods of time when she is well enough to attend school and sits in a special Bee Chair, they hoist her into positions at school, this is what she should have at home but there simply is no room! Kelly and Rikki are doing more lifting and handling than they should be doing, this is due to the fact that no carer would be able to lift Kaye because of the risks to the carer’s health. This limits the support that can be provided.

Kaye is registered blind which impacts on her physical ability as she feels around her but does not attempt to explore further. Kaye requires constant supervision, especially now that she has a baby sister.

Kaye’s parents have a great deal of patience with Kaye as she communicates by screaming and crying. She is very sensitive to sounds and will react badly to even just a cough. Kaye self-harms by head banging and pulling her own hair. She hits herself all the time in the face and has caused bruising in the past on her face. Kelly did speak of how this breaks her heart seeing her child inflict this pain on herself and how much it emotionally hurts her to restrain her as gently as she can.

Kaye has a low frustration tolerance and therefore has behavioural issues. Challenging behaviour includes: biting others, stress reactions to frustration, hitting others, throwing objects, screaming, rocking and flapping. Kelly is regularly being head butted, hit and hair pulled by Kaye. Professionals from GOSH have said that the ideas and help they would like to put into place to try and relieve this situation will never happen in their current living conditions it is simply too small.

Kaye is under a variety of medical professionals for her various conditions this means a lot of appointments and at times admissions. She is severely developmentally delayed and is physically disabled as well as being blind. Along with suffering seizures she urinates an enormous amount day and night owed to her condition Diabetes Insipidus. She also has a rare and poorly understood underlying health condition called Septo-Optic Dysplasia. This is a name given to a child whose condition where a child is diagnosed with two or more of the following problems; Optic nerve hypoplasia, midline brain abnormalities, & pituitary gland adnormalities. This is a congenital condition which is present at birth.

She also has Panhypopituitarism which is the decreased (hypo) secretion of one or more of the eight hormones normally produced by the pituitary gland at the base of the brain. Kaye produces no hormones at all she is full dependent on hormone replacements and growth hormones. The seizures are made worse by her medication as they cause her to hold in too much fluid.

She has very high care needs and is fully dependent on her parents for her personal care and mobility. Merely changing her clothes can prove to be very difficult as Kaye can become very frustrated and unhappy with this. She also has feeding problems and is still on pureed food and is spoon fed by her parents.

On top of all of this stress, strain and worry Kaye is very vulnerable and has an emergency protocol for administering IM Hydrocortisone.

If Kaye was to have an Adrenal Crisis…..

“Stress can overwhelm someone who doesn’t have the necessary adrenal hormones. Medical experts believe that traumatic events like a car accident a shock to the body (Kelly worries about dropping Kaye if she jerks her body when being carried) may trigger an Addisonian/Adrenal crisis. Even the flu or a stomach virus can stress out the body. This is life-threatening! Kaye can go into shock. An Addisonian/Adrenal crisis can be extremely dangerous if cortisol levels are not replaced very quickly.

This is a major worry for Kelly, Rikki and the Professionals as if the Ambulance struggle getting up quickly to Kaye, she may not survive.

It saddens me that all I have wrote about in this heart breaking story so far is Kaye and her Mammy and Daddy, there has been very little mention of her little sister. The siblings of all these special children also suffer and miss out on so much as the medical needs of their brother or sister always comes first.

Kelly & Rikki last year managed to work on a shift swap system one parent worked whilst the other cared for Kaye and looked after Winnie. The parents preferred to work and not to be reliant upon benefits. However they could not sustain this due to exhaustion and Kelly left her job before the birth of Winnie. Rikki left shortly after to assist with the lifting as Kelly could not do it on her own. As Rikki was in and out of work this affected all of the different benefits and delays occurred in payment of rent and council tax, accruing arrears.

This family is in desperate need of two bedroomed downstairs housing, they are in an awful situation, they do not have access to any financial support to help pay off the rent arrears, they are a young couple on a low income. They found themselves in a worse financial place by trying to work as Rikki was struggling to commit to his self-employed job as a Landscape Gardener as he couldn’t commit to jobs and lost out on pay as he was needed at home. It would take this family 6 years to clear their rent arrears and debts at £35 a month…only then they would be considered to be re-housed.

These parents give there all to their children, Kaye is very vulnerable has several severe disabilities and medical needs, requires around the clock care…we immediately wanted to help this family have a better quality of life for the time they have Kaye and make happy memories in an environment where they could hopefully have a garden for Kaye to play safely with her sister and an extra bedroom so they could all maybe get a little more sleep.

When we clear their arrears they will be placed on emergency housing and the Social Worker is confident they will get re-housed very quickly. This will take away so much pressure that surrounds this family, they will receive more help as the carers will not be put at risk, more equipment for Kaye to use and be more supported. We are all praying that this happens in time for Christmas.

We are so pleased that their Social Worker found us…the awareness is spreading, thank you to everyone who has made this happen.

Quote from Kelly;

It is such a relief to clear a load of our money worries and we will be forever be thankful for our fresh start in a new house that is going to bring a much better quality life for all of us especially Kaye. Without the The Charlie Cookson Foundation this could not have happened, we couldn't ask for a better Xmas present! x x x

*********************************************************************************

Our Angel Boy Charlie….keep guiding us, thank you for giving us the strength to keep reaching out to these families, you know that all these special children want is their Mammy’ s and Daddy’s just like you did…we love and miss you so much xxxx

Well done to everyone who has helped make this happen!

Love from all of the CCF Trustees; Sarah, Chris Helen, Dan, Chris, Andrew and all the fantastic Volunteers xxx