December pg2 by fjhuangjun

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									10 UH                                                                                                   NEWS                                                                         Thursday, December 20, 2007




‘Thanks for saving
my son’s life’
BY MARK McKELVEY                              Elaine Donnell who have been like fami-
m.mckelvey@ulsterherald.com                   ly. No task was ever too much trouble, al-
                                              ways there for me emotionally when I
TO simply use the words “thank you”           needed encouragement to continue fight-
could never fully portray the esteemed        ing.
gratitude and emotions expressed by               “It is because of this belief in Billy, and
Charlotte Caldwell this week towards her      the positive contributions they have
family, friends and each and ever mem-        made to our lives that gave me the                                                                                                                           Billy gets a cud-
ber of the public that contributed to help-   strength to stand-up to the Royal Victo-                                                                                                                     dle from Santa’s
ing save Billy’s life.                        ria Hospital and the Health Minister and                                                                                                                     Helpers at the
   Despite having been told that Billy on-    take Billy to America.”                                                                                                                                      Santa Sunday
ly had six months to live when only eight         The emotional mother continued to                                                                                                                        event at the Cor-
months old in March 2006, Charlotte con-      thank every member of the public that                                                                                                                        ner Bar, Beragh
veyed how her family and friends never        has taken Billy’s story into their hearts                                                                                                                    in aid of his Bil-
gave up hope of finding a cure and sup-       and made a donation that has enabled                                                                                                                         ly's Ray of Hope
ported her every step in fighting to take     Billy to receive a proper assessment and                                                                                                                     Appeal.
Billy to America.                             treatment in Chicago.
   Charlotte said, “I have to thank my            “I am overwhelmed at the unbeliev-
family for their support and selfless com-    able generosity shown by strangers to-
mitment to Billy during the past two
years. No matter what negative diagnosis
was given by doctors here, my family
                                              wards Billy’s campaign. I am convinced
                                              that if it wasn’t for these donations then
                                              I wouldn’t have Billy today,” said Char-
                                                                                                THE FACTS ABOUT ANGELMAN SYNDROME
never gave up on Billy.                       lotte.
   “Also the support of friends Willie and        “This money meant it was possible to
                                              take Billy to America to get Billy a clini-       CHARACTERISTIC symptoms of Angel-         THE characteristic physical features of   • Physical therapy
‘I am overwhelmed at                          cal diagnosis for the first time which he         man syndrome that are usually pres-       this condition are not always obvious     • Special education
                                              would never have received otherwise.              ent include:                              at birth but evolve during childhood.     • Social skills training
the unbelievable                                  “The money donated will now help Bil-         • Delayed motor development, such         Characteristic physical features of An-   • Anti-epileptic medication.
                                                                                                as delay in sitting, crawling and walk-   gelman syndrome include:                  Angelman syndrome is not a degener-
generosity shown by                           ly for the years to come and I can never
                                              thank everyone enough for giving Billy            ing.                                      • Flattened back of the head              ative disease. Children with Angelman
strangers towards                             the hope of life we were looking for.”
                                                  Charlotte thanked her Minister, the
                                                                                                • Speech problems.
                                                                                                • Jerky, puppet-type movements.
                                                                                                                                          • Deep-set eyes
                                                                                                                                          • Wide, ever-smiling mouth
                                                                                                                                                                                    syndrome can expect a normal lifes-
                                                                                                                                                                                    pan.
Billy’s campaign. I am                        Canon Derek Quinn who christened Bil-
                                              ly in November 2005.
                                                                                                • Stiff-legged walking style.
                                                                                                • Hand flapping.
                                                                                                                                          • Prominent jaw and widely spaced
                                                                                                                                          teeth                                     Living with AS
convinced that if it                              She said, “I want to thank the Canon
                                              Quinn for all his prayers and support for
                                                                                                • Hyperactive behaviour.
                                                                                                • Loving, happy and social de-
                                                                                                                                          • Lightly pigmented hair, skin and
                                                                                                                                          eyes.
                                                                                                                                                                                    Although a diagnosis of AS is life
                                                                                                                                                                                    changing, it needn't be life destroying.
wasn’t for these                              the past couple of years and for under-
                                              taking the responsibility of auditing the
                                                                                                meanour.
                                                                                                • A child easily moved to laughter.       SOME of the common problems in-
                                                                                                                                                                                    Individuals with Angelman Syndrome
                                                                                                                                                                                    are generally happy and contented in-
donations then I                              Billy’s Ray of Hope Fund.”
                                                  Charlotte concluded by wishing every-
                                                                                                • Intellectual disability. A child with
                                                                                                Angelman syndrome will have delayed
                                                                                                                                          clude:
                                                                                                                                          • Feeding difficulties
                                                                                                                                                                                    dividuals, who like human contact and
                                                                                                                                                                                    play. AS individuals exhibit a profound
wouldn’t have Billy                           one a merry Christmas and a happy new
                                              year and to share in their optimism of a
                                                                                                development in all areas, and disabili-
                                                                                                ty is severe in most cases.
                                                                                                                                          • Disturbed sleep
                                                                                                                                          • Delayed toilet training (about 80 per
                                                                                                                                                                                    desire for personal interaction with
                                                                                                                                                                                    others. Communication can be difficult
today.’      - Charlotte Caldwell             new beginning for Billy in 2008.
                                                                                                CHARACTERISTIC symptoms of Angel-
                                                                                                                                          cent of adults are dry during the day).   at first, but as an
                                                                                                                                                                                    AS child develops, there is a definite
                                                                                                man syndrome that are sometimes           THERE is no cure for Angelman syn-        character and ability to make them-
                                                                                                present include:                          drome, but the child can benefit from     selves understood. It is widely accept-
                                                                                                • Small head.                             a range of treatments for some symp-      ed that their understanding of commu-
                                                                                                • Characteristic EEG (brainwave) ab-      toms including:                           nication directed to them is much larg-
                                                                                                normalities.                              •Speech therapy                           er than their ability to return conversa-
                                                                                                • Epilepsy (occurs in 80 per cent of      • Behaviour modification                  tion. Most afflicted individuals will not
                                                                                                cases).                                   • Communication therapy                   develop more than 5-10 words, if at
                                                                                                                                          • Occupational therapy                    all.




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