With the help of our amazing community, the Virtual Rose garden for cystic fibrosis has already raised over $12,400 for people living with CF in WA a week before 65 Roses Day has even begun! There are already 12 Personal Rose Gardens set up already! Among them is Oli and Jimmy’s Rose Garden. Mum Elli was kind enough to let us share her story about navigating life with 2 children living with CF. Head to the link below to read the full article.
“We found out Oli had Cystic Fibrosis before we even met him! During my pregnancy, multiple scans showed that Oli had issues with his bowel, and an amniocentesis confirmed CF. I went on to have Oli 6 weeks early after his bowel ruptured in utero. As soon as he was born he was whisked away to the children’s hospital and at 3 hours of age underwent major bowel surgery and was given a stoma. The next 6 weeks were an absolute blur as we rode the waves of NICU life, more surgery and trying to adjust to life as new parents.
Oli’s first year of life was very difficult. We were trying to come to terms with the diagnosis and treatment that comes with CF. All while being first time parents and dealing with an incredibly unsettled baby, not to mention the trauma that we had just endured. It was very difficult to put weight on Oli and we went through the rollercoaster of breastfeeding, pumping and topping up! To this day the sound of a breast pump sends shudders up my spine as any NICU Mum I’m sure will agree!
Today Oli is a very strong, happy, and active 8 year old. Oli has been incredibly resilient in terms of his respiratory health and has always managed to fight chest infections at home. However, he continues to struggle with gastrointestinal symptoms daily including abdominal pain & disturbances. This causes great discomfort and a psychological impact that has a ripple effect on school and home life. As a tiny baby in utero he defied the odds to survive, and today he continues to show that same strength as he navigates life with CF. We are incredibly proud parents and in awe of his brilliance every day.
Learning that Jimmy our fourth baby had Cystic Fibrosis was completely heartbreaking. Already having a child with CF meant that in the early newborn days when Jimmy was presenting with irritability, abdominal discomfort and offensive fluoro green poos, I began connecting the dots. This didn’t make the news confirming Jimmy had CF any easier to accept. Our world was completely shattered, we were grieving the loss of Jimmy’s health and we knew the challenges he would face as we had already walked the path of CF with Oli.
Unfortunately for Jimmy he has suffered immensely over his short 2 years. He has been frequently unwell, had multiple hospital admissions, invasive procedures and health hurdles. Jimmy is the most gorgeous, chubby baby. To know him is to love him! As parents to watch him suffer is very difficult. Every day he has a strict physiotherapy routine, inhaled treatments and medications to keep him well. Being the youngest of 4 keeping him away from coughs and colds is near impossible. All we want for Jimmy is a healthy childhood and a long happy life!”
Plant a Virtual Rose in Oli and Jimmy’s Rose Garden or start your own Personal Rose Garden to show your support for children like them and those affected by CF in WA.