In this episode I'm joined by Megan Gillett to chat about her daughter Nellie, who has the terminal genetic condition Metachromatic Leukodystrophy (MLD). Although this is obviously an emotional chat I was blown away by Megan's positive attitude to life despite Nellie's diagnosis. We speak about the grief of finding out Nellie's condition is terminal, the decision to have another baby, and the logistics of genetic testing including the options open to you if you find yourself in that position. Megan speaks about the emotional journey of parenting a child with a degenerative disease, and the importance of cherishing memories and how they're going about that as a family.
You can find Megan on Instagram @megan_mumma_sunshine
The Just Giving link we talk about in the episode to support Chestnut Tree House Children's Hospice is here:
www.justgiving.com/page/rory-gillett-london-marathon
Tags: MLD, SEND, parenting