What’s the part no one warned you about? It’s not just the appointments or the equipment. It’s the constant recalculating - energy, hope, grief, strength- every single day. And doing it without knowing what the future will look like. #medicalmom #disability #rettsyndrome #caregiver #Unfiltered
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Nine-year-old Lysbeth (known as Lizzie) lives with Rett syndrome, a rare genetic disorder which causes physical and communication difficulties. Lizzie knows what she likes and when picking her wish, she, with the help of her family, communicated to our Wish Maker with her big, beautiful smiles, eye expressions and noises 💙 Lizzie loves watching twinkling lights, hearing rustling noises and feeling the wind on her face. We granted her wish ‘to have sensory equipment’ so she can always feel calm
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