July marks National Bereaved Parents Awareness Month and we would like to say a heartfelt thank you to Shauna and Steven who have supported the MPS Society with an extraordinary fundraising campaign in memory of their precious son Noah. Here, Shauna shares some beautiful memories about Noah before we look back at their brilliant fundraiser.
About Noah
Noah is our first and only baby. He was reluctantly evicted and arrived safely via C-section at 42 weeks in November 2023. He was perfect. Huge, but perfect. He had the longest fingers and toes on the biggest hands and feet I’d ever seen. Noah was so settled and had such a calm temperament from the moment he arrived. He was the only baby who slept all night on the ward.
The midwives said he was a dream, and they weren’t wrong, he was my dream come true.
Noah mastered his smile early on, and was never afraid to show this off. He had such an infectious little ‘gurgle’ giggle that brightened up any room. He was so content and inquisitive. Despite potentially not being able to hear 100%, his eyes followed you everywhere and he was interested in absolutely everything. I remember when it snowed, we wrapped Noah up and stood at the back door watching the snowflakes, he was mesmerised. Nothing fazed my little man, not even his heel prick test. He was so chilled, content and the happiest little baby boy.
Noah’s life was full of love, care, affection, attention, stimulation, cuddles and smiles every single day.
He loved nothing more than showing off his dance moves to "Baby Shapes and Sounds" every morning as part of our routine. Above this though, Noah’s absolutely favourite thing was having snuggles with his mummy and daddy.
Noah was, and is, my world. Losing Noah in such a sudden, tragic way has been nothing short of hell. Something I’m still very much trying to navigate my way through. I don’t believe the old sayings of "time is a healer", I don’t believe any parent will ever heal from losing their child.
Learning that Noah had a rare genetic condition has carried a huge burden in my grief journey so far. I think naturally as a parent, you carry the guilt and blame yourself for anything and everything that affects your children. So learning that Noah inherited MPS I Hurler from both me and Steven has been very difficult.
Before this, we had no idea of MPS. We’d never heard of it.
Noah presented with hearing loss, having failed three hearing tests and also having a hernia detected at five weeks. There was no link between any medical professionals that these were potentially symptoms of MPS. Noah suddenly fell critically poorly and spent the following sixteen days intubated in hospital. During this time the doctors investigated everything. Again, repeating to each other on rounds that he had failed hearing tests and a hernia, and no links were made. No links were made even when Noah’s test results came back positive, we were told this would be a false positive because the conditions it tested for were "too rare". It was only following Noah’s tragic passing that we received the comprehensive genetic testing results showing that it was not "too rare" and Noah did in fact have MPS, MPS I to be specific.
We will continue to support the MPS Society
MPS is always going to be a part of our life now, and every year we will continue to support the MPS Society in any which way we can, whether that be through making a small donation directly from us, organising some fundraising for Wear It Blue or just continuing with the Weekly Lucky Lottery each month.
Nothing will ever change what has happened for us, and for our precious boy, but the only thing I can hope and pray for in my lifetime is that most importantly, a cure is found, and that changes will be made to the newborn screening in the United Kingdom, so that rare conditions like MPS can be identified from the start.
We will never know now how Noah’s life would have been and how he would have been affected, but I’ve done enough research to know that early detection and treatment is so vital.
This year we felt it was too soon to organise or commit to anything extravagant to fundraise, but we felt it was important to at least try, if anything, just to raise awareness. Hopefully, over the years to come, we can continue this. I wish to share a heartfelt thank you to all who shared our social media posts and were able to donate. It really does mean everything to us, thank you.
And finally, to my beautiful Noah. Thank you for choosing me to be your mummy, you are my biggest blessing and always will be. People often say "they’re in a better place" when a loved one passes, but that isn’t the case as there is no better place for you than in my arms, and God are they empty. My heart is broken into too many pieces that won’t ever be repaired, but every single part of it belongs to you. I miss you as much as I love you, with every ounce of my being. Sweet dreams my love. Remember, mummy and daddy are always with you.
Thank you
We would like to say a special thank you from everyone at the MPS Society to both Shauna and Steven for raising an incredible £4,339 as part of their Wear it Blue campaign in May to help support those affected by MPS, Fabry, and rare complex conditions. Thank you so much to you both and to all your family and friends who took part and donated and for sharing this amazing collage of support.
We are here
We understand how hard it can be to talk about the loss of your loved one and we are here to listen and support you, and those close to you. If you would like to talk to someone confidentially, please get in touch with our Support and Advocacy team.
Call us on 0345 389 9901 or email advocacy@mpssociety.org.uk
Bereavement support
If you have been through a bereavement we have support for you. Our Support and Advocacy team can connect you with Rare Minds, a counselling service that specialises in rare diseases.
You can access a live, instant chat service via GriefChat which provides emotional support, access to trained bereavement counsellors and referral to other specialist bereavement services for free.
Creating a tribute can be a personal way to remember someone special. We have partnered with Much Loved, who will help you create a special place to share your stories, thoughts and memories with family and friends.
