Sebastian’s Action Trust provides emotional, social and practical care for life-limited and life-threatened children and their families. From their flagship facility, The Bluebells in North Waltham, Sebastian’s Action Trust offer family respite care together with outreach and specialist support at a second centre in Berkshire. The service aims to reduce isolation, providing meaningful support, while building resilience to help beneficiaries face the uncertainties of the future.
Receiving the news that a child is seriously-ill and may die before reaching adulthood is devastating. A family’s world is turned upside down and knowing what to do or how to access help can be overwhelming. Families need continuing care throughout their child’s life – no matter how short. Crucially, they will continue to need support after their child’s death, through their grief and loss.
Prior to the Covid-19 crisis, these families were already treading a painful and difficult path, knowing that their child was living with a condition that would dramatically shorten their life. The families supported by the Trust are some of the most vulnerable in society; most went into complete lockdown to shield their immune compromised children from the potentially fatal risk of contracting the virus.
HIWCF awarded a grant of £10,000 in 2020 as part of the NHS Fund enabling Sebastian’s Action Trust to provide emergency support during the pandemic to vulnerable Hampshire families in the form of vital food packs, children’s activity packs and online support.
Assunta Soldovieri, Head of Family Services from Sebastian’s Action Trust said: “We aim to walk alongside families through the good days, the bad days, and everything in between with assigned key workers who provide support to each family according to need. The grant from HIWCF enabled us to continue supporting families even through the difficult period of the pandemic.”
Hannah and her daughter Tabitha are just one family who have benefitted from the services of Sebastian’s Action Trust. Tabitha has a 22Q11 deletion – a disorder caused by the deletion of a small piece of chromosome 22. People with this condition are more likely to develop certain autoimmune disorders and personality disorders. Tabitha was diagnosed very early on in life and more recently was also diagnosed with Tango 2 which means if she doesn’t eat enough or get the right amount of nutrients, her body will go into metabolic crisis. These conditions will affect Tabitha for the rest of her life. Tabitha needs to take four different types of medication four times a day – and this means Hannah has to ensure the correct medicines are up to date and ready when needed. On top of this, due to Tabitha’s conditions, eating meals is very difficult because at half her chronological age she can present with difficult behaviours. Hannah and Tabitha’s life is full of medical appointments and hospital visits – Tabitha is registered with four different hospitals.
During Covid-19, Hannah and Tabitha shielded and Sebastian’s Action Trust stepped up their support. Hannah said: “Sue [outreach worker] was amazing, when we were at the hospital, it was just great to have another pair of hands. There are some conversations, I don’t want Tabitha to hear, so Sue would sit with Tabitha while I would talk to the doctors about Tabitha’s needs”.
“On top of that, Sue would just be there for me, she was a shoulder to cry on, someone to talk to when I needed. Helping me with forms, being an extra pair of ears at meetings, it meant that I wasn’t alone”.
During lockdown, Sue ensured Hannah received an emergency food parcel and called regularly to check in – she also provided fun activities for the family. When Tabitha had a hospital stay during lockdown, Sue made sure that Hannah felt supported, always at the end of the phone. Hannah continues: “It’s someone else to talk to. When the doctors didn’t listen to me, Sue gave me the confidence to push back and fight for Tabitha”.
Hannah has been supported by the Trust since 2014, and will continue to be supported for as long as she needs. When asked what the Trust meant to her, she said: “Sebastian’s Action Trust are our extended family; I always know they are here for us. The Bluebells is a home away from home”.