Maddi's mum Shelly looks back at their fun-filled summer months and all the great memories they have made together with family and friends. It's been eleven years since Maddi was first diagnosed with MPS III Sanfilippo and Shelly knows to take every day a step at a time, whether that includes watching Mr Tumble on repeat, trying to cope with little to no sleep or feeling helpless at times. Amid the ups and downs, these moments together are a reminder of what matters most.
Prom
The college year ended with a fantastic prom night. Maddi is very lucky, as she has now been invited three times and with only one more left, we are already planning the final colour scheme. We enjoyed the evening dancing away at Portsmouth Football Club.
Accessival
It was such a great and safe space.
In July we joined the accessible festival at Thomley. The sun was shining, Sally can vouch for that, and what a fun family afternoon we all had! Maddi even got involved by playing the drums with one of the acts. It was such a great and safe space where we could relax and enjoy ourselves, with a play zone, arts and crafts, face painting, live music, pizza trucks and of course ice-cream. Thank you to the MPS Society for this great day out and our lovely goody bag.
Appointments
We had our second appointment at the University College London NHS Foundation Trust (UCLH). The doctors there were amazed with Maddison's progress after seeing her last year when she was poorly. They were delighted at the bounce back and plan to admit Maddi for a couple of nights to collect all the current baseline information to support her going forward.
Day trips
It was a day of smiles, sunshine and fresh sea air.
Together with her sister and Stu, Maddi had some great days out at the local farm where she has a membership but the biggest trip of all was our adventure to the Isle of Wight. I was brave, there were no carers but I had some friends and their kids for company. The team at Wightlink FastCat ferries were so helpful getting us on and off the boat. After a walk down the pier, we hopped on a bus to a garden centre for a mooch and lunch, fish and chips unsurprisingly, and then we spent the afternoon on the beach. Of course there was a cheeky ice-cream involved too! It was a day of smiles, sunshine and fresh sea air. Good to know and very helpful for us was the free equipment provided by Ryde Beach, a Changing Places toilet right on the esplanade as well as decking which ran down through the sandy beach.
Catching up
We were so happy to catch up with some MPS families too. In June, we attended Tillie-Mae's Carnival of Hope, where we also saw Lily and Penny and not to mention a Love Island star! Jon’s Hippy Chick festival to celebrate his 18th birthday was so much fun and we had a great day out at Marwell Zoo with Harley and his family.
Day care
I’m not going to lie, I was worried.
Maddi has also attended adult day care, which, I’m not going to lie, I was worried about. Although she is 18 years old, Maddi is a giant toddler and fits more into a kids environment, but my worries were not necessary. She absolutely loves going and the staff are wonderful with her, taking her on lots of trips to the park, baking, doing arts and crafts and having sensory time.
Looking ahead
As Maddison approaches her 19th birthday, there is much to celebrate. She is back to eating orally and, while she is not currently drinking, her PEG remains a helpful support. Maddi's cheeky giggle, the occasional mischievous slap and her endless enthusiasm for walking make every day unique.
We are so grateful for the memories we have made and are excited for all the adventures still to come.
