WOW, we are totally blown away by the quilt Lucia received this weekend. It is absolutely stunning and Lucia loves it. She has wanted it on her bed every night, has had it laid out on the floor as a blanket to play games on and has snuggled on the sofa under it. A heartfelt thank you to you amazing team of stitchers, you should all feel very proud of the incredible work you do. We feel very privileged to be part of it.
Lucia was born at home on a beautiful spring morning and seemed like a typical newborn. However after a couple of weeks it was clear things were not so typical after all. She vomited constantly and violently, had chronic constipation, struggled to maintain let alone increase in weight, failed her newborn hearing test and had a heart murmur. After two lengthy hospital admissions in the first six months of her life, we were given the diagnosis of Noonan syndrome.
Unfortunately, the desperation to get her to eat, along with the horrendous vomiting, meant that Lucia developed a full oral aversion. At just a few months old she completely refused to eat by mouth. She had to have a nasal tube and was fully tube fed for over a year.
After much perseverance, and strong will from all involved, we finally managed to get Lucia to eat orally. This was a huge accomplishment for her and we all felt immensely proud. She is now tube free and we have learnt and accepted her unique relationship with food, whereby she eats very little, but very often. Lucia has a range of health issues, including a heart defect, which are monitored very regularly. She has a team of consultants who have known her since babyhood and is at the hospital for appointments several times most months. She handles this all so incredibly, especially as when she was a baby she would start screaming as soon as we turned into the hospital drive. Lucia is absolutely tiny for her age, and falls well below all the growth charts. She is often mistaken for a child of a much younger age, but is quick to correct anyone who dares to call her a baby!
Noonan syndrome is a life-long condition but we do not want Lucia to feel it defines her. We try to make everything accessible for her, to give her equity of her peers, to follow whatever path she chooses.