Amelia P's quilt   (Quilt Completed)
|Illness:|| Unbalanced Translocation 2p25.3 deletion, MYT1L syndrome, 11q 13.4-25 duplication, AVSD (surgically repaired), left eye congenital glaucoma, peters an
Theme: Baby Animals (kittens, puppies, bunnies)
Quilt delivered: 17th Oct 2023
Just wanted to give you the biggest thanks to every single one of you for completing Amelia's quilt! It is incredible- so pretty and I can tell each stitch is completed with love :)
Amelia is going to love all the snuggles in this quilt!
Stitched by: Marilyn Foyle
Amelia is 2 years old and has all the multiple complex diagnoeis that I have written above. Amelia is a very happy and strong little girl that amazes everyone each day with her big smile, giggles and strength with all the obstacles that she has to face.
Amelia is the only one in the world with her genetic sequence; Unbalanced Translocation 2p25.3 deletion and 11q13.4-25 duplication and this has caused her diagnosis list of over 20 life long complexities. Amelia writes her own path.
Amelia had a 3 week NICU stay for hypothermia and feeding issues (NG fed). Then by the age of 5 weeks old she had heart failure and was trialled on heart medication. Amelia at 8 weeks old had left eye Iridectomy surgery to lower her high eye pressure and a small addition pupil (opening to try and allow light in).
Amelia at the age of 3.5 months had complex lung collapses and ICU stays. Then when she was stronger at 4 months she had a long term stay in hospital whilst she waited until 5 months old for her major AVSD and pulmonary artery plication surgery. Sadly her lungs both collapsed during surgery and she had a further stay in PICU/CICU and HDU on CPAP until her lungs were reinflated and she was stronger.
Amelia should never have orally fed due to a late diagnosis of an unsafe swallow and high risk of aspiration at 8.5 months old. As parents we stopped feeding her by bottle before 4 months as she had lots of incidents with severe sickness, choking, needing recovery position and ambulances to A&E and stays at hospital. She then had an NG permanently placed until her Corflo PEG approx 14 months old and has thrived since with her weight and settled on this current prescription milk.
Amelia had a very bad 4 months over last summer with complex colds, viruses and chest infections. Amelia's sleep study showed she needed a CPAP ventilator and we’ve seen a massive improvement in her level of energy and happiness since last September when this was commenced.
Amelia had major hip surgery in January for her right hip dislocation and was hip spica casted for 8 weeks. She had surgery a week ago for her metal work to be removed and a new hip spica, this should be removed in 3 weeks time. Surgeon said Amelia was “the hardest” she’s ever done!
Amelia is known as our “Amazing Amelia” and she is our ray of sunshine.