Do you want to join me in making a difference? We are raising money in aid of MEF2C Foundation and every donation will help. Thank you in advance for your contribution to this cause that means so much to us.

Our Clemmie's story;

In Feb 2022, James and I answered the phone to the Guys Genetic Team and learned that Clemmie had an extremely rare genetic condition, MEF2C. In that moment we finally had something tangible that tied together all of the health, physical and learning challenges she had experienced. It felt like it should have been the answer we needed - and for many things it was - but it also started a journey where we processed the loss of an ease of life she could have had. Although being in lockdown, we’d seen on social media other little ones of the same age take their first steps, say their first words and realise skills and opportunities with little difficulty. We had hoped Clem could catch up with the milestones but at that point we had the final piece of the puzzle that this was going to be an ongoing and lifelong challenge.

MEF2C is a condition which touches the majority of your life. From epilepsy, to physical disability, learning disability to absence of speech to an unsafe swallow, as Clem’s parents we need to be by her side constantly. Before we’ve even considered our normal parental duties, we are there to ensure she has the right opportunities, she has physical access to places, to provide at home therapy, to transition and lift her and to provide emergency care to name just a few.

Every day we count our blessings and we are so lucky to have Clemmie in our lives. She fills our home with joy. She has a giggle so infectious she has people in tears of laughter. She loves to read, to be with her favourite people and to watch Bluey. Despite her challenges, Clem has a power that brings people together and even though she isn’t able to verbally communicate, at nursery she has friends that help her with her bag, read books with her and stand alongside her to include her. Those children leaning in to support her on a daily basis mean the world to James and I and we are so grateful for those friendships she has.

We are confident that Clemmie loves her life. But as a parent carer, it can be extremely hard. The doors for children with severe needs is constantly shut in your face. The emotional exhaustion of fighting for your child can floor you some days and we work to keep our spirits high whilst the system has you fighting just to validate the needs of your little one, let alone provide any tangible help.

As parent carers we navigate logistics across many hospital appointments, take on the physical burden of lifting, transitioning and moving her safely and usually we are operating on very little sleep as we care for her in the night. It’s all made a lot easier by Clem’s smiles, belly laughs and her motivation to achieve but the cold stark reality is, it’s tough. For her, for us as parents and for all those people supporting her.

As of yet, MEF2C has no cure or treatment but with the work of the newly formed foundation, scientists are being funded to develop existing biological technologies to find treatments, a cure and ways of making these 300 children and young adults lives a little easier.

The newly formed foundation has come at a time when we have also welcomed our second baby girl to the family, Goldie, who has much of her sisters spirit and cheekiness. The two of them give us so much strength alongside the helping hands, kind words and quite often just the physical support from our friends, family and nursery community.

We really can’t say in words how hugely grateful we are to everyone joining us to support in fundraising to help provide an easier future for the Meffy kids. It really means the world. Thank you.

Hannah, James, Clemmie & Goldie xx

More information about MEF2C Foundation: The MEF2C Foundation is partnering with scientists to accelerate groundbreaking research with the aim being to develop a treatment for those with MEF2C associated conditions, whilst providing information and support for our families along the way