We are sharing with you the story of the Forsyth Family and beautiful Baby Lorna, who was born with Metabolic Condition (MMA) and their experience of dealing with her condition and the associated non medical costs.
Sharon Forsyth’s third pregnancy had been normal and it was with huge happiness that she and her husband Alex welcomed Lorna into the world in October 2014. The birth was straightforward, but in the months following the birth a terrible story was unfolding for the family.
Lorna had been born with a rare genetic condition called methylmalonic aciduria (MMA) which means her body cannot produce an enzyme necessary to break down protein. The inability to break down the protein produces toxin build up in her blood. Normal childhood illnesses such as vomiting or diarrhoea can be particularly dangerous and require hospitalisation. Without treatment, the disorder can lead to coma and death in some cases.
Taking care of a critically ill child is one of the most physically and emotionally draining tasks a parent can face. Beyond handling the physical challenges and medical needs, you also have to deal with your child’s emotional needs and the impact that a prolonged illness can have on the entire family. Sharon and Alex have 3 children, Molly who is 6 years, Orla who is 4 years, and Lorna, 1 year.
When Lorna is not in the hospital the ‘well plan’ that Sharon follows a restricted protein diet with special protein free milk and food supplements to ensure she meets her daily requirements. Sharon travels to C.U.H. every 4 weeks to have Lorna’s blood taken, but it is a painful process as sometimes it can take up to 4 attempts to obtain her blood successfully.
In the future Sharon and Alex may have to learn how to insert an NG feeding tube to minimize Lorna’s time in the hospital. Sharon has to make sure her daughter eats regularly. The pressure and stress is constant and unending.
What it takes for Sharon to ensure that Lorna, and her two other daughters are happy and healthy is debilitating. Since the diagnosis in June 2015, Lorna has spent a over 50 days and nights in the hospital for injections and illnesses.
The financial impact the Forsyth’s have undergone is immeasurable. They had no choice but to hire an au pair to take care of Molly and Orla, a costly necessity as Alex does not get paid for time off and Sharon remains at Lorna’s side while she is in the hospital. For the first 6 weeks that the au-pair was working, Sharon spent 4 of those in the hospital with Lorna, 45 minutes away. Travelling to and from the hospital, paying for parking and buying herself food, Sharon’s expenses only continue to grow.
Speaking about the support they received from Cliona’s Foundations, Sharon Forsyth said:
“I will never forget the morning I opened the envelope from Cliona’s Foundation. To receive the cheque from the Foundation meant so much to us. The non-medical expenses associated with Lorna’s frequent hospital stays are very costly and have added a huge level of additional stress to our lives”
If you want to help us help more families like the Forysths you can do so by donating here or contacting us on 061 – 331333