Lucy
Lucy Thompson was born in Oct 2018 weighing 6lbs 14.5oz. She was perfect in every way. Just before we were due to go home and start our new life with our precious baby Lucy had to do the newborn hearing test which she failed. Lucy had a repeat test done 2 weeks later, which she also failed and then at 9 weeks old she had a more detailed test done which told us she had mild permanent hearing loss. As the months went by we noticed Lucy wasn’t reaching her milestones. She attended physio to help her and by 9 months she was sitting up unaided.
At 10 months old we met with Lucy’s paediatrician and we brought up our concerns about her milestones and they send us straight for genetic testing.
After weeks of numoirous bloods and poking and prodding we were told at 11months old that Lucy has Zellweger syndrome/pbd.
Our hearts were shattered hearing the prognosis. A moment no parent should go through. It took us a few weeks to get our heads somewhat around the idea that the life we once planned for our little girl wasn’t meant to be.
If it wasn’t for zellweger uk we wouldn’t be as positive as we are today. Lucy is thriving and progressing and is currently shuffling and has just received a nimbo Walker which will hopefully get her on her feet some day. We try and be as positive as we can each day and we will continue to make amazing memories with our little girl and give her the life she deserves.
Lucy is the happiest little girl with the most beautiful smile and infectious laugh. Her personality is really shinning through and we are enjoying the endless laughs she gives us daily.
She is our amazing warrior and she will continue to defy the odds.🙌✨