{"id":581915,"date":"2026-07-12T14:29:11","date_gmt":"2026-07-12T14:29:11","guid":{"rendered":"https:\/\/www.europesays.com\/ie\/581915\/"},"modified":"2026-07-12T14:29:11","modified_gmt":"2026-07-12T14:29:11","slug":"mum-describes-heartbreak-as-son-who-never-cried-diagnosed-with-childhood-dementia","status":"publish","type":"post","link":"https:\/\/www.europesays.com\/ie\/581915\/","title":{"rendered":"Mum describes heartbreak as son who ‘never cried’ diagnosed with childhood dementia"},"content":{"rendered":"

A Swansea mother has spoken of her devastation after discovering that her seemingly content baby boy was actually showing early signs of a rare and fatal condition.<\/p>\n

Tammy McDaid, 34, initially believed her son Tate was simply “too good to be true” because he seldom cried during infancy.<\/p>\n

When the hospitality manager took her two-year-old to be assessed for autism, physicians noticed an unexpected bump on his head and ordered a CT scan.<\/p>\n

The results at Birmingham Women’s and Children’s Hospital raised the possibility of Sanfilippo syndrome, commonly referred to as childhood dementia.<\/p>\n

\"TAMMY<\/p>\n

Tammy had noticed striking similarities between Tate and other children with Sanfilippo online<\/p>\n

| <\/p>\n

GOFUNDME<\/p>\n

“Had Tate not had autistic traits very young, we wouldn’t have had the CT scan, and we wouldn’t have had the diagnosis,” Tammy explained.<\/p>\n

The family were subsequently referred to Noah’s Ark Children’s Hospital in Cardiff for further investigation.<\/p>\n

The diagnostic journey proved to be an agonising ordeal for the young mother, spanning some 18 months of uncertainty.<\/p>\n

Thirteen months after the initial suggestion of Sanfilippo syndrome, medical professionals reassured Tammy that her son did not have the condition.<\/p>\n

Yet she remained unconvinced, having noticed striking similarities between Tate and other affected children she had seen online. <\/p>\n

Youngsters with the syndrome typically display distinctive features including full lips, a button nose and heavy eyebrows.<\/p>\n

“When it was first mentioned, I went on social media and saw other children that looked exactly like my son. But then the experts said it wasn’t that, so I doubted myself,” she recalled.<\/p>\n

\"\"\/<\/p>\n

Children with Sanfilippo typically display distinctive features including full lips, a button nose and heavy eyebrows<\/p>\n

| <\/p>\n

GOFUNDME<\/p>\n

In August 2025, specialists summoned her back for a meeting with genetic and metabolic consultants.<\/p>\n

“This is where we were told Sanfilippo was on the table and it could be Type A, the worst one,” Tammy said. “It took me four hours to do a 45-minute drive home because I was having panic attacks and couldn’t stop crying.”<\/p>\n

The official diagnosis of Sanfilippo Type A came in mid-September, confirming her worst fears.<\/p>\n

This rare neurodegenerative condition affects approximately one in 70,000 births, equating to roughly 240 children annually across the United Kingdom.<\/p>\n

The disease causes youngsters to progressively lose abilities they have acquired, including speech and mobility, while also triggering seizures and movement disorders.<\/p>\n

“As it progresses, Tate will start losing the ability to eat, walk, communicate,” Tammy explained. “The brain damage takes over, and he will become completely bed bound and dependent on machines.”<\/p>\n

The condition typically proves fatal during the teenage years, with NHS treatment currently limited to managing pain rather than addressing the underlying disease.<\/p>\n

Tammy’s hopes now rest on a revolutionary treatment awaiting approval from the American Food and Drug Administration, expected in September this year.<\/p>\n

Should the drug receive authorisation, it would represent the first available treatment for this rare paediatric condition.<\/p>\n

While the therapy cannot reverse existing damage, it should halt further deterioration of the brain.<\/p>\n

The potential cost, however, is staggering, with estimates from a Sanfilippo charity suggesting it could reach between \u00a31.5 million and \u00a33 million.<\/p>\n

\"\"\/<\/p>\n

Tate could progressively lose his speech and mobility<\/p>\n

| <\/p>\n

GOFUNDME<\/p>\n

“Once the FDA approves the treatment, the only battle I have is money, and the longer that takes, the more Tate deteriorates,” Tammy said.<\/p>\n

The mother has launched an official fundraising campaign through Just4Children, a registered charity.<\/p>\n

“Tate is a spring chicken,” she added. “He lives to climb, he runs like Usain Bolt, and I want to keep that.”<\/p>\n","protected":false},"excerpt":{"rendered":"A Swansea mother has spoken of her devastation after discovering that her seemingly content baby boy was actually…\n","protected":false},"author":2,"featured_media":581916,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":"","_share_on_mastodon":"0"},"categories":[78],"tags":[868,18,135,19,17,5,63657],"class_list":["post-581915","post","type-post","status-publish","format-standard","has-post-thumbnail","category-health","tag-dementia","tag-eire","tag-health","tag-ie","tag-ireland","tag-news","tag-sgg"],"share_on_mastodon":{"url":"https:\/\/pubeurope.com\/@ie\/116907485732080929","error":""},"_links":{"self":[{"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/posts\/581915","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/comments?post=581915"}],"version-history":[{"count":0,"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/posts\/581915\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/media\/581916"}],"wp:attachment":[{"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/media?parent=581915"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/categories?post=581915"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/tags?post=581915"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}