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BDFA STAFF NEWS

The BDFA is delighted to introduce Mimi Petty as our new Peer Befriending Coordinator. Mimi is a bereaved parent and her son Bertie passed away in 2019 from CLN1 Batten disease. Mimi is already well known to families as the founder and volunteer facilitator of Bertie’s Helpers.

Mimi has over a decade’s experience of working with sick children and their families as a Health Play Specialist with the NHS, including at Great Ormond Street Hospital. Mimi believes that the Peer Befriending Project will provide much-needed support for families and that the wealth of knowledge families gather on their Batten journeys, will be invaluable to pass onto others at the start of theirs or at a point of change.

Mimi has been working in collaboration with the BDFA for 15 months, delivering Bertie’s Helpers. Bertie’s Helpers was set up in memory of her son Bertie. Whilst Bertie was unwell, she found good quality ready-meals were a lifesaver, when cooking became impossible during evenings dominated by preparing medications and dealing with seizures. Bertie’s Helpers provides a Tesco food delivery of ready-meals and treats for families going through an extra challenging time, such as a new diagnosis, disease progression, a hospital stay, moving house or end of life situations. It is hoped that not having to shop for food or prepare meals will give families more precious time together.

“I feel very privileged to have got to know the Batten community through Bertie’s Helpers,” says Mimi. “I am very excited to be stepping into the role of Peer Befriending Coordinator and developing relationships with more families to provide much needed peer support.”

Mimi is married to Andrew, co-founder of Bertie’s Helpers and as well as Bertie, they have a 9-year old son called Stuie and Henry, their 5-month old baby. She also has a very small dog called Joey, who has not coped with lock down well and now won’t let anyone in the house.

If you are interested in finding out about Peer Befriending at the BDFA please contact Mimi at mimipetty@bdfa-uk.org.uk or call her on 077877 55278.

We are hoping to run the training over 6 weeks starting at the end of April (term time) and running until the beginning of June.

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With your support we can help support families living with the devastating diagnosis of Batten disease

The BDFA receives NO funding from Government and are only able to carry out our work because of the strong commitment of our volunteers and fundraisers.

Thank you so much for your support

How your donation can help

£5 a month
provides a support and information
folder for a newly diagnosed family

£20 a month

helps to run our family support services

£50 a month
enables us to run training workshops
for professionals to educate them on
Batten disease