Fae's quilt    (Quilt Completed)

Thank you

Thank you so much for Fae's quilt she loves it!

Thank you so much we appreciate it so much, this will now be Fae's quilt for when she goes for surgery every 2months

Finished photos

Individual squares

Card

Stitched by: Rachel Lloyd

Biography

Fae was born at 37 weeks with no complications. She started having issues with vomiting. At first they said it was severe reflux and after multiple long hospital stays she was sent home with a NG tube due to failure to thrive. She then saw a paediatrician who picked up on a lot of other issues including a heart murmur. She was then referred to a cardiologist who found pulmonary stenosis at a moderate level. It wasn’t until they found this heart problem that they decided to do genetic testing.

She had the normal genetic testing in Bolton who said all was clear. They then sent them to the Manchester hospital and we got a phone call for an emergency appointment. We went & without even doing the genetics for the condition the doctor said she’s certainly got Noonan syndrome. We waited months for an official diagnosis.

Unfortunately they still don’t know why Fae has severe gastro issues resulting in her being complete PEJ tube fed & also ending up in hospital quite a lot. With Fae a simple cold can shut her intestines & stomach down & she ends up in hospital for long periods. We’ve just done 5 weeks due to Fae getting a cold.

Due to Fae's very weak immune system we don’t leave the house much. We are only usually home 2 weeks before Fae picks up another infection. In January they did a midline Canula in her right foot and this wasn’t watched so unfortunately this caused damage and she now struggles with walking also.

Every time we go into hospital for very long stays which can last up to 3 months they seem to find something new. In January they were doing scans on her kidneys as she wasn’t urinating a lot & found one of her kidneys is 1.1cm bigger then her other. Unfortunately it’s been getting bigger & is now awaiting a urology appointment. In May they found that her tonsils are extremely big and need removing so now awaiting a ENT referral also. This quilt will be used as Fae’s hospital quilt.