There is something wonderful about seeing things go full circle.

Twenty one years ago I made a phone call. An incredibly kind woman called Anita spoke to me for ages on the phone, virtually hand holding me through one of the most difficult times of my life. Only days before, doctors had diagnosed my daughter Molly with Spinal Muscular Atrophy. At the time, doctors and researchers knew relatively little about the condition. The prognosis was even more vague. I was, frankly, terrified about what the future would hold for my little girl.

Anita McCauley was a wonderful woman. She set up the Jennifer Trust after her own daughter, Jennifer, died from the condition aged just seven months old.

When doctors diagnosed Jennifer, they told Anita the condition was so rare that almost no parents had experience of it. That no one researched it and no support systems existed. Anita decided to change that.

She set up the charity to ensure others did not have to go through what she did, creating a place for people to connect, offering support and guidance to everyone who asked.

Anita founded the Jennifer Trust so that no other family would have to face the same isolation she experienced. She created a community where families could connect and where people could access support, advice and understanding whenever they needed it.

And when I did, she helped me more than she will ever know. I will be eternally grateful.

Over the years, the Jennifer Trust grew and developed. Anita passed away in 2006. It was very sudden. She was and still is still greatly missed by the entire SMA community, having personally helped so many.

The work continued and in 2018 the charity adopted the name SMA UK.

Since that first contact, the charity have continued to support our family in so many different ways. When Stan was diagnosed with the same condition two years later they were there. They have offered help on practical issues, emotional support and have connected us with other families who understood what it was like. We’ve attended conferences, enjoyed fun filled weekends away, and even helped to obtain a specialist wheelchair for Molly.

When SMA UK appointed Molly as its first ambassador, it was good to see her being actively involved in helping a charity that had done so much for us. She then went on to do a volunteer internship with them before they offered her a paid role with them while studying for her Masters. She has loved every second, partly due to her fantastic and supportive boss, Portia Thorman. It is also absolutely wonderful to see her working on projects that will help other families.

So when she received a personal invitation to Buckingham Palace to attend the Garden Party, held by the King, as a nod to the work she was doing it was a special moment indeed. And very fitting indeed that she attended with Portia.

Another charity close to our hearts, Active8, attended on the same day. Liz Olive, a social worker, set it up in 1990 after a young disabled man she was working with expressed a desire to meet other young people like him. This incredible charity supports young people with physical disabilities. It offers them the opportunity to build friendships, gain new experiences and build confidence and independence. The charity recently received the King’s Award for Voluntary Service. This is essentially an MBE for charities and the highest award that a voluntary organisation can achieve. The CEO, John Sweeting and Chair of Trustees, Mark Stevens were there to represent this fabulous organisation who have positively impacted the lives of so many young people.

Our family have been very fortunate to benefit from the work that they do. Both Molly and Stan have been part of their programme and have gained so much from it. They have had some brilliant experiences, made good friends and gained so much confidence. The team are incredible, all totally committed and passionate.

For all, receiving an invitation to Buckingham Palace was a huge honour in itself.

But the day became even more special when Molly and Mark met the King. It was a great opportunity for them to share some of the work they have been doing.

As a mum I was incredibly proud.

But it was also a moment to recognise the impact some of these fantastic and hard working charities can have on people’s lives. Without them, I don’t know if our family would be where we are today – I certainly would not have anticipated when I made that phone call, that one day, my daughter would be shaking hands with the King.

I am eternally grateful.