The mother of a four-year-old boy has said her \u00ab\u00a0heart is broken\u00a0\u00bb after he was diagnosed with a form of childhood dementia.<\/p>\n
Tammy McDaid, from Swansea, said her son Tate has Sanfilippo Syndrome and is not expected to survive to adulthood.<\/p>\n
She has set an \u00a311,000 fundraising target for her \u00ab\u00a0handsome little man\u00a0\u00bb to potentially take part in clinical trials abroad in the hope of slowing the development of the disease.<\/p>\n
Tammy, 33, said her main focus was on making precious memories with her son, as there is currently no cure for his condition.<\/p>\n
Sanfilippo Syndrome Type A, also known as Mucopolysaccharidosis type III (MPS III), causes the gradual loss of abilities, such as walking and eating.<\/p>\n
Because of its neurodegenerative nature, Sanfilippo Syndrome is often called \u00ab\u00a0childhood Alzheimer’s\u00a0\u00bb or \u00ab\u00a0childhood dementia.\u00a0\u00bb<\/p>\n
According to the Society for Mucopolysaccharide Diseases (MPS Society), a charity which helps children living with Sanfilippo Syndrome, about 140 children in the UK have the condition.<\/p>\n
Tate, who has always been non-verbal, was diagnosed with autism at the age of two.<\/p>\n
\u00ab\u00a0Deep down I always suspected there was something more,\u00a0\u00bb said Tammy.<\/p>\n
Tate underwent an MRI scan in March 2024, when medics found spaces in his brain which were a sign of dementia, Tammy said.<\/p>\n
He was then referred to Noah’s Ark Children’s Hospital in Cardiff, where the MPS III diagnosis was made.<\/p>\n
She added that her \u00ab\u00a0little sidekick\u00a0\u00bb made her \u00ab\u00a0a very proud mum\u00a0\u00bb.<\/p>\n
\u00ab\u00a0From day one he really has been the most happy and content little boy,\u00a0\u00bb she said.<\/p>\n
\u00ab\u00a0He enjoys the simple things in life and he has the most contagious smile.<\/p>\n
\u00ab\u00a0I am so blessed and proud of him. Even though he can’t talk, he hugs and kisses me.\u00a0\u00bb<\/p>\n
Tammy said Tate loves to run and climb, and she hoped clinical trials \u00ab\u00a0can slow down the regression of [Tate’s] mobility, as that is what is going to hit me the hardest\u00a0\u00bb.<\/p>\n
\u00ab\u00a0He could climb before he could walk. I just want him to be able to do this for as long as possible,\u00a0\u00bb she said.<\/p>\n
\u00ab\u00a0My handsome little man won’t live to see his 18th birthday. My heart is broken and honestly, I am one drained mumma.\u00a0\u00bb<\/p>\n
After setting up a GoFundMe page and receiving thousands of pounds within days, Tammy said it was \u00ab\u00a0the first time in a long while I have felt hope\u00a0\u00bb.<\/p>\n
\u00ab\u00a0This time last week I couldn’t talk about him without crying,\u00a0\u00bb she said, adding she was grateful for the support of the Ty Hafan children’s hospice and the local community.<\/p>\n
Tammy said she had contacted the Cure Sanfilippo Foundation to see if Tate could be accepted on to any clinical trials abroad.<\/p>\n
She said she \u00ab\u00a0didn’t have time to waste\u00a0\u00bb as she had been told that children with the condition can start to deteriorate from the age of five or six – and Tate turns five at the end of this month.<\/p>\n
\u00ab\u00a0I got the diagnosis and got told basically to come back when he starts deteriorating because there is nothing they [medics] can do,\u00a0\u00bb said Tammy.<\/p>\n
\u00ab\u00a0The next year is quite critical in Tate’s life as it’s around now that things start to show.\u00a0\u00bb<\/p>\n
If Tate is not accepted on to a trial, Tammy said she wanted to use the money raised \u00ab\u00a0to travel to as many countries as possible with him\u00a0\u00bb.<\/p>\n
Ahead of World Sanfilippo Awareness Day on Sunday, she said she also wanted to raise awareness of the condition, as both she and Tate’s father carried the Sanfilippo syndrome gene.<\/p>\n","protected":false},"excerpt":{"rendered":"
The mother of a four-year-old boy has said her \u00ab\u00a0heart is broken\u00a0\u00bb after he was diagnosed with a form of childhood dementia. Tammy McDaid, from Swansea, said her son Tate has Sanfilippo Syndrome and is not expected to survive to adulthood. She has set an \u00a311,000 fundraising target for her \u00ab\u00a0handsome little man\u00a0\u00bb to potentially […]<\/p>\n","protected":false},"author":0,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"class_list":{"0":"post-9421","1":"post","2":"type-post","3":"status-publish","4":"format-standard","6":"category-uncategorized"},"_links":{"self":[{"href":"https:\/\/placedesnations.org\/index.php\/wp-json\/wp\/v2\/posts\/9421","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/placedesnations.org\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/placedesnations.org\/index.php\/wp-json\/wp\/v2\/types\/post"}],"replies":[{"embeddable":true,"href":"https:\/\/placedesnations.org\/index.php\/wp-json\/wp\/v2\/comments?post=9421"}],"version-history":[{"count":0,"href":"https:\/\/placedesnations.org\/index.php\/wp-json\/wp\/v2\/posts\/9421\/revisions"}],"wp:attachment":[{"href":"https:\/\/placedesnations.org\/index.php\/wp-json\/wp\/v2\/media?parent=9421"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/placedesnations.org\/index.php\/wp-json\/wp\/v2\/categories?post=9421"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/placedesnations.org\/index.php\/wp-json\/wp\/v2\/tags?post=9421"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}