Finding joy at Keech
I’m Emma, Robin’s mum. Being his mum is something I’ve dreamed of forever, but our journey together has been anything but the dream we imagined. Robin was born on 29 October 2021, after a beautiful pregnancy and a difficult labour.
He arrived in the world with a whirlwind of medical concerns, from a heart murmur to oblique talus and, later, a life-altering diagnosis of Coffin-Siris syndrome.
Facing the Unknown
The first weeks of Robin’s life were a blur of worry and unanswered questions. Feeding was a constant struggle, and episodes where he turned blue left us terrified. I knew something wasn’t right, but it took immense courage to speak up and advocate for my son. Finally, an MRI confirmed hydrocephalus, and we began a long and challenging hospital journey, meeting specialists and bracing for what lay ahead.
When Robin was diagnosed with Coffin-Siris syndrome, our world shifted. The news was both devastating and a relief—we finally had some answers. But the future felt frightening and uncertain.
Discovering Keech
We were referred to Keech Hospice in June 2021. The word “hospice” felt scary, but Keech showed us it’s about living well, not just about end-of-life care. The support, compassion, and understanding from the Keech team have transformed our lives. From specialist medical advice to warm hydrotherapy sessions and weekly playgroups, Keech has become our lifeline.
I’ve made deep connections with other parents who understand what it’s like, who ‘get’ me, and we lift each other up. Robin is thriving now, a happy, brave 2-year-old who lights up every room. He’s our miracle, and we couldn’t be prouder.
Forever Grateful
Keech’s support has given us hope and strength. They’re always there, ready to listen, advise, and be there for Robin and our family. The future may be uncertain, but knowing Keech is by our side makes it less frightening.
Help fund our care
We believe specialist end-of-life care should be FREE and available for everyone across Bedfordshire, Hertfordshire, and Milton Keynes.
By donating today, you can ensure Keech is there for you, your family and community when you need us most.
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