17 weeks ago we began "shielded" lockdown starting, ironically, with flu, perhaps Covid-19, sweeping through the family. Thankfully, although it took time, we all felt better eventually - but within days, all Lulu's carefully-crafted life just disappeared: the brilliant supportive fun people, the activities and therapies set up for her - inclusive cycling, dance & movement, physiotherapy rebound, hydrotherapy/liquid vibrations, sensory storytelling, music workshops - the Central London visits to the South Bank, museums and galleries, all so welcoming... and access to blood tests. Scary situation!

But through Unique's social media platforms, we re-connected with friends in the same situation and learned what they were up to. Entelechy Arts introduced us to Zoom and fun daily sessions with Joy of Sound have kept Lulu "in contact with" people outside her home - if she cares to focus upon a screen! She can become distressed and irritable and has had a tough time with seizures. Keeping Lulu safe and well while trying to provide her with enough stimulation and entertainment without going out has been a challenge. Our younger daughter joined us to help, while we all "worked from home". We are lucky - Lulu has her all-weather garden trampoline and gazebo to explore, 3 companions who share her support between them and, until end May, the weekly Thursday highlight 'Clap for Carers', which she joined robustly (and continued afterwards) with her very big drum.

It's not been so great for many other families, coping without the ever-present critical medical and healthcare support many Unique parents rely upon, especially in their children's early lives. Life is stressful enough in normal times: parents may have to manage several youngsters alone while prioritising the acute needs and behaviour of their profoundly-disabled child and accommodation and services are often inadequate. During lockdown, with all community amenities closed, family members and support workers unavailable and access to London parks problematic, some friends have been stretched to the limit and beyond. Unique's 'Listening Ear' Helpline has continued throughout to be a lifeline for families and the charity's information services have risen to meet new challenges on a daily basis. Unique is a factual, stable, calm source of support in a frantic world for thousands of desperate people.

Unlike Lulu(!), Unique has grown hugely in the last thirty years, from a few dozen member families to 22,351 (today). The small specialist team has been recruited and trained painstakingly over that time; every penny raised through fundraising is dedicated to ensuring that staff can support families with little-known rare and complex conditions. The charity is always seeking ways to meet all needs within its income, derived solely from members' fundraising and voluntary donations/grants. Right now, just when members need Unique most, income has plummeted due to the effects of Covid-19 and the financial outlook for the rest of this year is bleak indeed.

If you enjoyed Lulu's dogged love of life and musical display and can spare some cash, please donate now to help Unique continue its vital work. Thank you. :-) Gill Peter Lulu and Lizzy

UNIQUE'S CORONAVIRUS CRISIS APPEAL

Coronavirus has had a terrible impact on Unique's fundraising this year, as for many people, businesses and charities. We anticipate a loss of almost £180,000 in 2020 without the wonderful fundraising events, marathons, cake sales, skydives and much more that members do to raise funds for the charity.

Yet the need to support families hit with new chromosome/gene disorders diagnoses remains critical. And many Unique families with adults or children with severe complex medical conditions, anxiety or financial issues are suffering because of the virus, the isolation of lockdown, the lack of schools and of care staff. They desperately need support. Unique must continue to provide prompt, clear and accurate information, connect families, back up doctors and publish chromosome-specific guides. The need never goes away.

Please help to make up the fundraising deficit by donating to the special Unique Coronavirus Crisis Appeal. Thank you.