Ellen 🩵
Region: IE
Wednesday 14 October 2026 16:48:36 GMT
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Shannon♡williamward :
I have it too classic galactosemia 🥰
2026-10-15 11:54:56
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Lucy Gavin :
Hey Ellen , my little boy Toby was diagnosed with propionic Acidemia at 5 days old . Propionic Acidemia is actually so rare that it isint included in the heel prick in Ireland but it affects a liver enzyme also . Toby has just had a liver transplant after spending a lot of his first year in hospital under the metabolic team . They really are the best in the world . It’s so hard to navigate the new normal of being a medical mam but with time things become easier . Sending lots of love and positivity to you and your family xx
2026-10-27 20:00:15
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jade ❤️🔥 :
Fellow Galactosemia mam here! Thank you for sharing your story, I found out my son had Galactosemia when he was 5 days old and I’ll never forget that phone call to go straight to temple street😢 but I do think the heal prick test should be done straight away in the hospital to help prevent symptoms from getting extremely bad my son was very very sick at the start! But he is now 5 and it does come with struggles but he is happy and healthy!☺️
2026-10-14 23:31:09
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coggers1994 :
You explained that so wonderfully, I have goosebumps. All I can say is he’s very lucky to have you as a Mammy 🥰
2026-10-14 20:05:14
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Susan Meegan :
Hi Ellen I totally sympathise with you, I had my first child 41 years ago, went through a nightmare for 6 weeks before finally getting a diagnosis of Classic Galactosemia, I subsequently had 4 kids 2 with Galactosemia, Temple St were life savers, if I can give you any help don't hesitate to reach out 💞
2026-10-14 22:41:53
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beckymooney123xx :
my daughter was also diagnosed with a rare disease from the heel prick test called pku! we are so thankful for that test her life would be very different if undiagnosed 🥲 sending your little boy lots of love x
2026-10-14 19:40:20
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Tammy Doolin :
Hi Ellen, my son was diagnosed with PKU from the heal prick he was 1 week old. I’ll never forget that phone call, the shock and the fear of the unknown. It’s been a journey of acceptance for sure. Temple street have been amazing. We are 2.5 years into our journey doing great and still learning everyday. I remember those early days so well I knew something wasn’t right I mentioned that the milk wasn’t suiting him while we were still in hospital after birth, I was advised to keep going by a midwife. The first 2 nights at home he was so unsettled, he had the startle, upset tummy and screemed the place down. He was like a new baby after his diagnosis and the correct formula to suit him. Wishing you a your little baba all the best on your journey ❤️
2026-10-15 12:14:25
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Megan Southwell Kenny 🩰 :
Ellen I can’t imagine how scary that must have been getting that call and going through those first few weeks your poor little man😔 thank you for sharing and sending you and your little boy so much love [Red heart][Red heart][Red heart]x
2026-10-14 19:32:26
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Lina Nilsson :
Hi! I really understand how you feel. My son was diagnosed with isovaleric acidemia when he was just 4 days old. It’s a condition that means his body can’t break down certain parts of protein. We went through the same struggles with breastfeeding as you did. He would just fall asleep, no matter how hard I tried to keep him awake. Eventually, he became very ill. Today, he’s doing well and is 6 months old ❤️
2026-10-26 22:10:26
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Lisa :
Thanks for sharing your story ❤️I can’t imagine what you went through in the early days and since. It must have been tough on you both with feeding. How old is he now? How have you managed with solids etc?
2026-10-14 19:21:50
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Md :
you only know when you know. please remove your guilt if possible as all of the symptoms you describe can be so normal for babies! galactosaemia is so rare and great it is in screening to pick up.
2026-10-14 23:18:47
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Lucie Caunce :
my son was diagnosed with Cystic Fibrosis through newborn screening.I knew something was not right, I screamed from the rooftops, noone listened 😑 I was actually pushed in the direction of antidepressants. Had to do a repeat hel prick so we were at 5 weeks by diagnosis. at first it was obviously heartbreaking but also I was so relieved to have a plan.
2026-10-16 22:13:19
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Belinda :
Such a stressful time for you. I’m glad he’s doing well now. Can I just say your dog is so adorable in the background. Not a muscle moved through that whole video 😂
2026-10-14 22:33:39
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RayRaySopp :
Thank you for sharing. I’m a MSW in England looking after babies directly postnatal so at the same age. It’s interesting to hear your experience versus the sort of advice I’m used to giving. This is really educational, I’ll definitely keep this in the back of my mind from now on. Wishing your son all the very best x
2026-10-16 13:07:09
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lisamccabe51 :
Wow what a story, you are amazing, I am a public health nurse and will defo remember this story xx
2026-10-14 21:05:47
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user :
It's so good that they test for it there. My MIL has it, and it was prevalent in her family. We live in Scotland and were told they wouldn't test for it when our wee ones were born despite the family history.
2026-10-29 07:23:54
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swampy455 :
I have a friend who's grandson had this, and he is a healthy young teenager today. Diet is everything, and you will adjust and adapt to this condition. He will be fine.
2026-10-30 12:56:59
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Margaret Taylor :
Hi Ellen had my daughter 44 years ago she was diagnosed with PKU and Tempest Street was life-saving
2026-10-15 15:46:31
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Leona Rogers766 :
My son is 19 and he was diagnosed with PKU, and they are the same symptoms tired etc. And he was the only one out of my 6 children at that time with PKU and never heard about it before.
2026-10-16 20:19:00
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Karen Devoy515 :
hope your little baby gets better
2026-10-15 14:05:46
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ruthniriain :
Wow what a story. I can’t imagine going through that days after having a baby. You are a strong mama. Thank you for sharing 💕
2026-10-14 20:08:30
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Dan :
My son now 42 was diagnosed at wk 3 I remember his milk Nutramigen and I understand it’s still used
2026-10-17 05:46:17
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EmH96 :
Thank you for sharing 🥰
2026-10-15 05:11:51
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Yvonne Casey :
Thank you for sharing your story very interesting never heard of it wish u and your son all the best ❤️👏
2026-10-15 00:01:26
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Finley :
After hearing your story and then reading your comment, I am so pleased that he is doing well.
2026-10-14 22:32:27
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