Fundraise for myaware

The festive season is often a time for celebration – a time to gather with those we love and hold dear. For Tracy and David, seeing their son Oliver with a smile on his face this festive season means everything after the journey they have been through. Tracy and David would like to share that journey with you of how their son Oliver was diagnosed with Congenital Myasthenic Syndrome and the pride they feel that through it all Oliver always had a smile on his face….

Our Myasthenia journey started in May 2021. That's when Oliver was finally diagnosed.

Watch Oliver's story

Oliver had difficulties from birth, he struggled to breathe and struggled to keep milk down. After lots of testing, scans,  and investigations he was diagnosed with bilateral vocal cord palsy and at the age of two weeks he had a  tracheostomy fitted along with an NG tube to help with feeding. We were told it was idiopathic. Oliver had lots of  support from our health professionals including physiotherapy, dieticians, speech and language therapists and access  to the ENT department. Oliver couldn't make any noise so we learnt basic Makaton signs so we could communicate  with him. We were regular visitors to the hospital due to our large number of appointments and complications with  breathing and chest infections.

Oliver’s vocal cords finally strengthened and at the age of two years old and he had his tracheostomy removed. We  were over the moon, and we thought that life would be much simpler for him. Not long after, we started to  notice Oliver was struggling to walk, climb up stairs and pick himself up from the floor without any help or aides. We were told that it was probably because he had a rough start in life and his floppy head was because he had a tracheostomy. This slowly worsened over time.

I voiced our concerns again, this time they listened. It wasn't long before he was seeing his physiotherapist again and we had appointments booked in with muscle specialists. Two and a half years later after many tests and through the process of elimination Oliver was diagnosed with Congenital Myasthenic Syndrome.                                    

This was a difficult time for our family but through it all Oliver always had a smile on his face.

Once we had a diagnosis, we reached out to myaware for information and leaflets to share amongst family members, friends, and Oliver’s Nursery (now Primary school). The teachers have found them very useful, and they have even photocopied them and sent them to all their staff members. Great for spreading awareness! Myaware also posted out t-shirts and running vests for our fundraising. Something we are very proud to wear. We also joined the Facebook Group which has been great for any questions we have, and I like to think that we've also helped other's when they have questions. It's great to have the support and know it's so easily accessible, and it's comforting knowing that there are other people out there with the same struggles. We're not alone.

We are aware of the Zoom sessions but have not yet joined any. It would be great to get Oliver involved once he is a little older.

The myaware community means everything to us. Just knowing that there is a charity out there that helps, supports, and spreads awareness of Oliver’s rare diagnosis is a comfort blanket for us. We know that if we are struggling with anything the help is there. Without it we would be lost.

Myaware receive no government or NHS funding and rely on donations and gifts to support their work.

We are the myasthenia community.

Myaware are proud to help people like Tracy, David and Oliver who have gained so much by accessing our awareness raising materials and closed Facebook groups and given back to others with their incredible fundraising most recently raising £2,230 when they took part in the Great North Run 2022; but Tracy and David can’t keep calling on the same network of family and friends for donations. So, they are asking that as you celebrate the festive season with your loved ones, will you also celebrate your myasthenia community by donating £10?

Wherever you are, you are part of this amazing community and we thank you for being part of it.

The festive season can bring many financial responsibilities and we understand that you may not be able to donate. If this is the case, could you share our appeal with your family and friends via social media, text, phone, or email? Ask them to visit our website to find out more.

Can you donate £10 to help keep the smile on Oliver’s face?

Wishing you a very joyful festive season.

Tracy, David, and Oliver x

If you would like to share your story with myaware to feature in a future newsletter, appeal or on the website, email [email protected]