Update on Fundraising /donations of prizes

We have sent out over 100 requests for help and as yet have received a handful of replies more negative than positive.

I wrote to all the "Big" football clubs and have only received a couple of replies.

Barnsley, Sheffield Utd and Sheffield Wednesday and Everton have donated.

Rotherham can't help as we aren't LOCAL. ????
Portsmouth can't help.


Bolton can't give us anything but "we can purchase something from them at a discount".


Manchester Utd have passed the details onto their Charity Dept.


Most of the Bigger Companies can't help as they already give to Major Charities so any help is usually from local shops etc.

Hamleys, Harrods, H.Samuel and Britvic/Pepsi can't help.

Brooklands and Livingwell have donated.

Crystal

 

allready give to the major charitys? when i needed help i tried the british epilepsy association what a waste of time they were all they want is for someone to collect money to make their president even richer. i think most major charitys are the same i eventually got help from a small voluntary run charity 100 miles away in hartlepool, epilepsy outlook for anyone who needs help pm me for details

 

This is Plan B!

When I've had a rejection letter stating that they either give to major charities or can't help, I have sent this back.

36 High Street
Dodworth
Barnsley
S75 3RG
/08/05




Dear

Thank you for your reply.

We would respectfully ask you to bear us in mind should you reconsider external requests.

As I said previously, we are a newly formed Charity, ran by parents of Cystinosis sufferers of which there are approx only 125 in the Uk.
I enclose further information as to what these children/young adults face.

Thank you once again for your time.

Yours



C.D. HERRING


What is Cystinosis?

Cystinosis is a rare degenerative disease that primarily affects children

Cystinosis is a genetic metabolic disease that causes an abnormal accumulation of the amino acid, cystine,in almost all of the organs of the body. It occurs when mechanism to remove excess cystine is defective

The accumulated cystine prevents cells from functioning correctly and damages organs

Symptoms include:

Failure to thrive

Height retardation

Loss of appetite

Polyuria (excessive urination)

Polydypsia (excessive thirst)

Severe dehydration

Hypophosphatemic Rickets (bone disease)


Left untreated, death at a very young age



Cystine crystals accumulate in the kidneys, eyes, liver, spleen, muscles, pancreas, thyroid, brain and white blood cells slowly destroying them. Without specific treatment, children with Cystinosis develop end stage kidney failure at approximately age nine.

Other complications can include:

Dental problems

Muscle wasting

Swallowing difficulties

Breathing difficulties

Diabetes

Blindness

Hypothyroidism

Late puberty

Dementia

Careful attention must be paid to fluid electrolyte replacement during gastrointestinal illness, since obligatory urinary losses are two to six litres of electrolyte - rich water per day.

Access at all times must be given to:

Unlimited drinking water

Unlimited bathroom privileges

Symptomatic Therapy

Some of the following medications must be given daily to replace nutrients lost through leakage of the kidneys:

· Citrate

· Vitamin D

· Potassium

· Phosphate

· Calcium

· Sodium

· Magnesium

· Bicarbonate

· Carnitine

Thyroid function can be affected and permanent medication may be required to rectify this problem.

Foot orthotics & leg braces may be required to alleviate severe leg pain caused by rickets.
Aggressive Therapy

· Cysteamine-Bitartrate (Cystagon™)



Cystagon™ only works at clearing out some of the crystals from some of the organs for six hours after the medication has been taken.

This means it must be given every 6 hours, 24 hours a day for life.

Children must be woken in the middle of the night, every night to receive the medication.

Side-effects of Cystagon™ include, gastric reflux, severe bad breath & body odour. The medication can be so pungent as to cause the stomach to reject it within an hour of taking it. Every dosage-missed means that the kidneys, liver, etc are being destroyed at a faster rate and transplant operation would be inevitable.

Commencing cysteamine treatment (Cystagon™) before two years of age is believed to delay the onset of kidney failure. It is not yet known whether this treatment benefits all organs of the body as some complications of the disease appear later than others.

Cystagon™ does not reduce crystal accumulation in the eyes. Cysteamine eye drops must be given every waking hour, to clear the crystal build up in the corneas. Cystine crystal build up in the eyes cause:

· Severe pain

· Photophobia

· Blindness

Cystagon™ while it is the only treatment available does not cure Cystinosis or stop the deterioration of the organs. It only slows down the deterioration process and it is hoped that this will buy the Cystinosis sufferer enough time for the Researchers to find a cure.

As yet there is no known cure for Cystinosis, which means life expectancy at this time still remains uncertain.

Therefore funding for research onto finding a cure is vital if the Cystinosis sufferer can hope to lead as normal a life as anyone else.


Probably harsh but they may reconsider.