{"id":370771,"date":"2026-04-02T06:52:16","date_gmt":"2026-04-02T06:52:16","guid":{"rendered":"https:\/\/www.newsbeep.com\/il\/370771\/"},"modified":"2026-04-02T06:52:16","modified_gmt":"2026-04-02T06:52:16","slug":"our-daughter-has-a-rare-one-in-100000-condition-and-nearly-died-twice-celebrating-her-third-birthday-was-monumental","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/il\/370771\/","title":{"rendered":"\u2018Our daughter has a rare one-in-100,000 condition and nearly died twice \u2013 celebrating her third birthday was monumental\u2019"},"content":{"rendered":"

A couple whose daughter has a rare one-in-100,000 condition and nearly died twice after contracting a common respiratory virus has said celebrating her third birthday this year felt \u201cmonumental\u201d.<\/p>\n

Kate Anderson, 32, a teaching assistant, and her partner Anthony Wales, 36, a sales adviser, who live in South Shields, Tyne and Wear, said their daughter Florence Wales was diagnosed with Aicardi syndrome \u2013 rare genetic condition\u00a0which affects the brain and causes seizures \u2013 at seven weeks old after suffering repeated fevers.<\/p>\n

According to the Aicardi Syndrome Foundation, the incidence of Aicardi syndrome is estimated to be approximately one in every 100,000 live births, with around 4,000 cases worldwide.<\/p>\n

Kate said the condition means that Florence, now three, is disabled, non-verbal, oxygen-dependent and unable to walk; she needs to be fed through a tube in her stomach; she has up to five seizures a day; and she is prone to infections.<\/p>\n

Florence has had 34 hospital admissions in total since October 2023 \u2013 but two in particular left Kate and Anthony fearing the worst, as Florence remained in intensive care for days after contracting respiratory syncytial virus (RSV) and doctors said she \u201cmight not make it\u201d.<\/p>\n

\"Florence<\/p>\n

Florence has had 34 hospital admissions since October 2023 (Collect\/PA Real Life)<\/p>\n

Now that Florence is back at home and has \u201cbounced back\u201d, defying the odds, Kate said she cannot believe her daughter is \u201cstill here\u201d.<\/p>\n

\u201cIt was her birthday the other day, so that was a monumental birthday for me because of what we\u2019ve just been through,\u201d Kate told PA Real Life.<\/p>\n

\u201cI ended up delaying going back to work because I thought, \u2018No, I\u2019m going to spend her birthday with her\u2019, because I didn\u2019t think she would be here.<\/p>\n

\u201cI just feel very grateful that we still have her and she has just bounced back so quickly.<\/p>\n

\u201cI always use the word \u2018resilient\u2019 when I talk about her.\u201d<\/p>\n

\"Florence<\/p>\n

Kate describes Florence as \u2018resilient\u2019 (Collect\/PA Real Life)<\/p>\n

Kate explained that she had a normal pregnancy and Florence was delivered via an induced labour, as she was overdue, in March 2023.<\/p>\n

The first-time mother said the birth was \u201cstraightforward\u201d, but she noticed Florence\u2019s left eye was smaller than her right.<\/p>\n

She said doctors initially attributed this to \u201cswelling from birth\u201d, but further testing at Sunderland Eye Infirmary confirmed she had coloboma\u00a0\u2013 missing tissue in a part of the eye \u2013 which can cause vision loss and sensitivity to light.<\/p>\n

At seven weeks old, Florence then started having seizures.<\/p>\n

\"Florence<\/p>\n

Florence was diagnosed with Aicardi syndrome at seven weeks old (Collect\/PA Real Life)<\/p>\n

\u201cBefore she was medicated, she was having 20 to 30 seizures a day,\u201d Kate explained.<\/p>\n

\u201cNow she has up to five seizures a day, which is obviously much better, but she has never been seizure-free.\u201d<\/p>\n

When Florence started having fevers as well at seven weeks, she had an MRI scan which revealed she had Aicardi syndrome.<\/p>\n

\u201cWe were devastated,\u201d Kate continued.<\/p>\n

\u201cIt\u2019s incredibly rare but it\u2019s so different with every child \u2013 some children with Aicardi can walk and talk, but Florence is fully disabled.<\/p>\n

\u201cShe\u2019s got no muscle tone, her legs are constantly in that frog-leg position, she has sight problems, she\u2019s non-verbal, she can\u2019t speak, and she can\u2019t do anything for herself, really.<\/p>\n

\u201cShe\u2019s PEG fed, so she\u2019s fed through her stomach, she\u2019s oxygen-dependent, so she has oxygen 24\/7, and then obviously the chest infections \u2013 she\u2019s prone to chest infections.\u201d<\/p>\n

\"Florence<\/p>\n

Kate said when Florence smiles it is the \u2018best thing ever\u2019 (Collect\/PA Real Life)<\/p>\n

In October 2023, Florence started developing repeated chest infections, meaning the family were \u201cin and out of hospital every couple of weeks\u201d.<\/p>\n

On December 1 2024, however, Kate said their \u201cworld was turned upside down\u201d as Florence was admitted to Sunderland Royal Hospital and diagnosed with respiratory syncytial virus (RSV).<\/p>\n

While the NHS says RSV is a common cause of coughs and colds and infections usually get better by themselves, Kate said it was particularly dangerous for Florence because of her weakened immune system from Aicardi syndrome.<\/p>\n

\"Kate<\/p>\n

The family enjoying an outing (Collect\/PA Real Life)<\/p>\n

\u201cIt was three nights (at Sunderland Royal) and she just wasn\u2019t improving,\u201d Kate said.<\/p>\n

\u201cShe was working really hard and, even on extra oxygen and higher-flow oxygen, her breathing wasn\u2019t improving.\u201d<\/p>\n

Florence was transferred to the Royal Victoria Infirmary (RVI) in Newcastle on December 4, where she remained in intensive care for four nights, and during this time Kate received a \u201chorrendous\u201d phone call.<\/p>\n

\u201cI got the call at 6am from Anthony, and he told me that Florence had taken a turn for the worst and I needed to get there straightaway,\u201d she said.<\/p>\n

\u201cWe\u2019ve learned to be resilient over the years, but nothing prepares you for hearing that your child might not make it through the night.<\/p>\n

\u201cWe were terrified. Everything felt completely out of our control.\u201d<\/p>\n

\"Florence<\/p>\n

Florence on her second birthday (Collect\/PA Real Life)<\/p>\n

It was during this time that Kate and Anthony first learned of The Sick Children\u2019s Trust and its \u201cHome from Home\u201d, called Crawford House.<\/p>\n

Crawford House supports families by giving them a place to stay just minutes from their child\u2019s hospital bedside \u2013 and Kate said this was their haven during the \u201cdarkest time of (their) lives\u201d.<\/p>\n

\u201cI couldn\u2019t bear the thought of Florence waking up or something happening and not being there,\u201d Kate said.<\/p>\n

\u201cShe\u2019s never had to face any of her hospital stays without one of us by her side\u2026 so I remember walking in and just feeling a weight lift off my shoulders.<\/p>\n

\u201cIt wasn\u2019t just a bed; it was a safe haven. Somewhere we could breathe, cry, rest.\u201d<\/p>\n

Florence was then transported back to Sunderland Royal on December 8, before finally being discharged on December 17, meaning they were home for Christmas that year.<\/p>\n

\"Kate<\/p>\n

Kate, Anthony and Florence enjoying Christmas in 2024 (Collect\/PA Real Life)<\/p>\n

However, within the first few months of 2025, Florence had nine hospital admissions and continued to have chest infections.<\/p>\n

She was admitted to Sunderland Royal on December 28 2025, had one night back at home on January 7 2026, and then returned to the hospital until January 26 as she \u201cstill wasn\u2019t right\u201d.<\/p>\n

During this time, Kate learned Florence had developed RSV for a second time, and she then took her to the RVI where she remained for three more weeks, and the family stayed in Crawford House again.<\/p>\n

Speaking about the impacts of the second RSV diagnosis, Kate said: \u201cWhen we got home and I was putting her to bed, I just thought: \u2018I can\u2019t believe that you\u2019re here\u2019, because we thought she was going to die.<\/p>\n

\u201cWhenever a child has to go on a ventilator, it\u2019s life or death, I think, but I don\u2019t think I really understood it the first time.<\/p>\n

\u201cIt has been horrendous, but I think I felt it more this time around.\u201d<\/p>\n

\"Kate<\/p>\n

The family at home on Christmas Eve in 2025 before Florence was diagnosed with RSV for a second time (Collect\/PA Real Life)<\/p>\n

Kate and Anthony ended up having a delayed Christmas in January this year, and while Florence faces many challenges, they said her condition has never stopped them from enjoying life.<\/p>\n

They go camping every year and said Florence loves sensory experiences and TV programmes such as In the Night Garden.<\/p>\n

Kate said: \u201cYou don\u2019t get much from her because of the condition she\u2019s got, but when she does smile it\u2019s the best thing ever.\u201d<\/p>\n

Kate and Anthony are now sharing their story to raise more awareness of Aicardi syndrome and RSV to help other parents, and to say thank you to The Sick Children\u2019s Trust and Crawford House.<\/p>\n

They said they have donated some money to the charity, but they hope to arrange larger fundraising events in future to give back.<\/p>\n

\"Florence<\/p>\n

Kate said Florence\u2019s third birthday felt \u2018monumental\u2019 (Collect\/PA Real Life)<\/p>\n

Reflecting on the last three years, Kate said: \u201cThere were two occasions where we thought she was going to die.<\/p>\n

\u201cHaving two major hospital admissions in the last two years, I honestly thought this time she was going to go, from how the doctors were talking.<\/p>\n

\u201cSo, I just couldn\u2019t believe that she was home and lying in bed.<\/p>\n

\u201cShe has just bounced back; she does it every time.\u201d<\/p>\n

To find out more about The Sick Children\u2019s Trust, visit: sickchildrenstrust.org<\/a>.<\/p>\n","protected":false},"excerpt":{"rendered":"A couple whose daughter has a rare one-in-100,000 condition and nearly died twice after contracting a common respiratory…\n","protected":false},"author":2,"featured_media":370772,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[10],"tags":[178347,178349,178346,163,134621,85,46,178348,64008],"class_list":["post-370771","post","type-post","status-publish","format-standard","has-post-thumbnail","category-health","tag-aicardi-syndrome","tag-anthony-wales","tag-florence-wales","tag-health","tag-hospital-admissions","tag-il","tag-israel","tag-kate-anderson","tag-respiratory-syncytial-virus"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/posts\/370771","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/comments?post=370771"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/posts\/370771\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/media\/370772"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/media?parent=370771"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/categories?post=370771"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/tags?post=370771"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}