Our precious baby girl was born being carried for 36.5weeks we thought everything would turn out just fine. I’d be able to experience what it was like to come home with my baby. But after she was born, Abigail stopped breathing damaging a part of her brain. The damage…..we wouldn’t know. We’d have to watch her milestones.
She was termed a ‘floppy baby’ and had low muscle tone which made even smiling a difficult task for her
By the time she turned a year, she couldn’t sit unaided nor had she started to crawl. Not a single doctor was able to diagnose Abigail and tell us what the road ahead held for us.
The fact that she looked like any other normal child made people oblivious to the fact that she wasn’t like other normal children, Why could no-one help us? From one specialist to another, going to a physio and OT to try and assist her to at least stand up using splints was only the beginning of her journey.
It was an absolute emotional roller-coaster for me as a parent you’re expected to be able to pick up the pieces and smile and give 200% of yourself even when there are days all you wanted to do was curl up in a corner and die. Abigail was diagnosed with Marfans Syndrome at age 12 (12 years of a fight we refused to give up on). A connective tissue disorder which affects heart, lungs, nerves, skeletal system and eyes. Currently this syndrome has affected her heart leaving her with an elevated heart rate and a valve that currently is being monitored as it possess a risk of leaking. Only time will tell what the next organ is that will be affected.
Because of the effect of the marfans on her life, she has always been a sickly child. Her one longing is to be able to be free……free to play outside and not worry about changing weather, free to run without struggling to breathe and free to express herself so that she is understood.
The one thing she is passionate about being with and caring for is children and physically disabled children because with them she feels a sense of worth. She is able to help them and they made her feel good about herself. Life today at 15 for ABBY is still not the easiest for her……she battles academically but she continues to strive to give her best at all times. She wants to please her educators and those around her so badly. She just wants to know what it’s like to be capable of doing things other kids her age can comprehend.
The Future Factory fundraiser would like to support Abby with her medical costs so we appealing for all to support this worthy cause.