Ethan and Daittons amazing journey

Ethan and Daittons amazing journey This page is for people to see what life is like living with twins but also twins with two different syndromes. Both boys are extremely unique.

Let's raise awareness on unique syndromes and wolf hirschorn syndrome. Join us on this journey

28/12/2024

Author: Grief to Glories

Of to nursery you would go with the big smile knowing when you got home you got the biggest of cuddles. My boy my beauti...
12/11/2024

Of to nursery you would go with the big smile knowing when you got home you got the biggest of cuddles. My boy my beautiful boy you were so brave, kind, gentle, loving, funny and loved to laugh and cuddle we were/are so blessed to have so many magical memories so many beautiful days so many laughs and my god so many cuddles. I will always talk about you and share your magical smile love both my boys so much💔💙

My beautiful, strong, brave, inspirational boy he has come so far I remember this day when we got a picture with no tube...
12/11/2024

My beautiful, strong, brave, inspirational boy he has come so far I remember this day when we got a picture with no tubes on his face. No matter how much we tried you can only go so many places on his face especially when his face was so small, to tape down his oxygen tubes and his NJ tube. His face would get so sore he has come so far so proud of him god I love him so much love both my boys so much 💙💔

When memories come up on Facebook seeing your beautiful smile, your hair was so long and blonde my god you hated when we...
11/11/2024

When memories come up on Facebook seeing your beautiful smile, your hair was so long and blonde my god you hated when we had to brush i as it got tangled so easily. Loved your long blonde hair I still have it. Loved how you got so excited to do activities but if you didn't want to do it you would let me know but you always had just the biggest of smiles how did we get so blessed with you god I miss you ethan and we talk to daitton every day about you. He loves laughing at the silly stories we talk about we all miss you it still doesn't feel real love both my boys so much 💔💙

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He loved helping mommy push his little brother he was coming on so much learning so much now all that's gone and just the pain and upset of what ifs. We miss you so much ethan it's not fair that your not here love both my boys so very much 💔💙

The last video of ethan walking, every parents worst nightmare to walk into your kids rooms and discover they have passed through the night. There are words to the utter devastation we are feeling as family. No warning signs we never got to say goodbye it's not fair I wish so much you were right next to me hugging me. We are trying our hardest to raise the money needed to give ethan the best funeral but it's so hard and expensive especially when we just don't want to let him down im scared of doing that so if you can please donate every penny helps share his page thank you for all the love and messages if your struggling with the page just message me https://www.justgiving.com/crowdfunding/Ethanscelebrationofflife?utm_term=VbxXAQR59 #fypシ゚viralシ #pleasehelp #fyp #God #donate #lifesnotfair #twins #whyme #prayer #myboy #reels #reelsfb #reelsviral #share #twin #lostwithoutyou #yourlove #myworld #nolimits #disability #disabilityawareness #disabilitysupport #awareness #letsgo #lostwithoutyourlove #Hero #heaven #proud #RIP

This is big step for Daitton not only is he sitting unsupported but he is eating. Wow well done Daitton so proud your going through so much you are such an inspiration and we love you so much new favourite Yogurts is the mix ups we love you Daitton my heart and the reason I wake up every morning to see your beautiful face and utter determination so proud ❤

https://www.justgiving.com/crowdfunding/Ethanscelebrationofflife?utm_term=DZnmQ3Xny Every parents worst nightmare saying goodnight to our beautiful boy to wake up to ethan not being with us no more I can't believe this is our reality. His laughter is only heard on the videos life's just not the same please up us raise funds to give ethan the best send off #fypシ゚viralシ #pleasehelp #God #whyme #donate #fyp #myboy #prayer #twins #heartbroken #RIP #toyoungtodie #lifesnotfair

Our beautiful boy who is a twin passed away in his sleep every parents worst nightmare to walk into in the morning we are trying our hardest to raise money for his funeral to celebrate his life and his achievements. Please share and donate if possible every penny counts https://www.justgiving.com/crowdfunding/Ethanscelebrationofflife?utm_term=KG3eQD5ba #fypシ゚ #fypシ゚viralシ #fyp #gonetoosoon #why #funeral #pleasehelp #donate #mylove #myboy #twins #bestfriends #heartbroken #whyme #sad #prayer #heaven #iloveyou #RIP #God #whygodwhy

Daittons beautiful happy face when he sees the train normally he isn't in to it but he loved it when we went. Ethans talking is beautiful I could listen to him talk all day. National Rail #communication #uniquechromosomedisorder #allinclusive #myboy #boysrule #livingourbestlife #twinlife #wolfhirschhornsyndrome #trainspotting #boys

Playing with the parachute
Playing with the parachute

Playing with both the boys with the parachute, I'm on my own so this is how I do it and as you can see right at the beginning ethan grabs hold of it and pulls me back he finds this extremely funny. I'm in my garden clothes so please ignore me I hate being in videos or photos god I hate being in them so much, but I couldn't resist posting this and showing how much ethan enjoys it daitton is just behind the camera on the floor. I love that the boys are just absolutely awesome

Ethans infectious laugh, literally giggling with him
Ethans infectious laugh, literally giggling with him

Ethan loving playing with water in the garden. His laugh is so infectious and puts the biggest smile on anyone's face

Ethan loving water play in the garden living his best life. His laugh is just so infectious when he laughs it justakes you laugh 😃

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Ethan and Daitton’s amazing journey

Hiya not sure what to write. The reason I have set up this page is for my amazing twin boys yes that’s right they are twins!. My boys are an inspiration they were born in 2011 we were told nearly straight away that Daitton would be severely disabled they told us he would not survive they wasn’t sure about Ethan during the pregnancy but when we got there genetic tests back it showed that Ethan had a unique rearrangement of his chromosomes and that Daitton had wolf hircshorn syndrome. As you can probably imagine we was devastated but we were holding the two most beautiful boys in our arms. We learnt how do medical stuff that no parent should ever have to learn we stayed in hospital for weeks and months on end birthdays, Christmas, New Years but we always knew our boys would fight. Over the years we have over come some difficult hurdles to name a couple both boys started having seizures from a young age we discovered Ethan could hardly see and is registered as severely sight impaired than we discovered he had hearing loss aswell. Daitton having to have multiple surgeries to repair his cleft lip and palate and than to put in a PEG which is a feeding tube in his stomach. Even with all of this going on we have had some amazing moments loads of laughter and giggles massive achievements to name a couple Daitton having a few spoonfuls of food, Ethan crawling daitton sitting unsupported. We have made so many memories to name a couple going to blackpoll and seaing the sea for the first time, going on rides at Drayton manor, feeding goats, holding owls. This is the reason I have set up this page so friends, family members or anyone that has a special child can see what our boys have been up to. My boys are my inspiration and others to they have over come and surpassed what the doctors ever thought was possible and we could not be prouder. 8 years on both boys go to school which they love we dream and hope like anyone else yes our dreams and hopes may be a lot different to other parents we cherish the little things wow my boys are so amazing and I’m one lucky person to be the parent to these two inspirational boys. We hope you follow us and enjoy looking at there progress through life