It’s Telethon week! The generous support of Channel 7 Telethon has made it possible for us to offer care packages that are free of charge to families where funding is either not available or additional care is needed from time to time. With Telethon’s support, we have delivered over 9,500 hours of in-home respite care to more than 70 children with life-limiting and complex conditions, free of charge since 2017.
Manna is one of those children. We met Manna and her family early this year and are privileged to be able to help care for little Manna, as well as some respite to the family. We spoke to Manna’s mum Patricia get a glimpse into what life is like for Manna and her family.
Tell me a bit about Manna – what kind of medical conditions is she living with and what does that mean when it comes to looking after her?
Manna is my beautiful baby daughter (15-months old) who lives with CDKL5 Deficiency Disorder. This condition causes her to have uncontrollable seizures, global developmental delay, poor muscle tone, cortical visual impairment, digestion and feeding difficulties and sleep issues. Manna is reliant on others for all activities of daily living, so looking after her is a full-time job.
When was she diagnosed? How did you (and your family) feel when she was diagnosed?
Manna was 5 months old when we received the results from her genetic testing. Her diagnosis caused mixed emotions; we were grateful to have an answer to the underlying cause of Manna’s epilepsy, but we were also overwhelmed with the grief of having a child with a life-limiting condition.
What does a usual week in Manna’s life look like?
Very busy! With Speech Therapy, Occupational Therapy, Physiotherapy, Hydrotherapy, Vision Therapy, play group and hospital appointments.
How long did Manna receive support through Telethon funding? When was that?
Manna received free-of-charge support for a couple months before her NDIS Plan started mid this year.
How has Hannah’s House made a difference in yours and Manna’s life?
Having a Support Worker from Hannah’s House has made the biggest difference to our lives. I am able to leave Manna for a few hours each week having peace of mind that she is being thoroughly looked after. Not only does this allow me to run every day errands that are difficult to do with a child with special needs, but this also gives me some downtime as well as special one-on-one time with my son.
What do you and Manna think of our Playtime Playgroups?
They are so much fun! It has been a great way to meet other parents on similar parenting journeys, as well as learn about inclusive places and parks around Perth.