28/02/2026
It’s Rare Disease Day. There is a long and varied list of diseases that fall within this term. Today, we would like to focus on Spinal Muscular Atrophy… and more specifically, our patient, Zaki.
Meet Zaki (or Kiki as we all affectionately call him), born with Spinal Muscular Atrophy (SMA) Type 1— a rare disease that affects approximately 42 babies a year in the UK. For the past 3 years, our Clinical Specialist Orthotist, Lynsey McCallum, has been working with Kiki and his mum, Tara to provide additional support following successful gene therapy and ongoing MDT therapies.
Kiki started with one of our DMO Custom Advanced Suits, which aimed to give him more torso control, hip stability and shoulder retraction. Our orthoses worked great for him, improving his stability and making him ‘far easier to handle’ in the words of mum!
It wasn’t long before Kiki outpaced the need for a full made-to-measure suit, and we reduced the level of support to a pair of DMO Custom Shorts, with the emphasis on hip and torso control and less on his shoulders. Using our DMOs as part of his multi-disciplinary therapy, he was soon pulling to stand and supported stepping. Kiki was also learning to self-propel his manual wheelchair.
“Recently, Kiki has grown lots and we felt he would benefit from more torso control to try and reduce his Lumbar lordosis and help with his upper thoracic spine to be more neutral. We have gone back into a suit which will address these areas whilst still being Dynamic for him to move and grow. As you can see, he chose one of our new patterns, which he loved.” – Lynsey McCallum, Clinical Specialist Orthotist
We’re incredibly proud to have supported Kiki and seen how well he has progressed over the years, and we can’t wait to follow his journey in the future. If you would like to see how Kiki is getting along today, then you can follow his story on Instagram Life_of_Zakimans, where his mum, Tara, updates his journey and does amazing work advocating for the advancement in treatment and therapies for SMA.
Thank you to everybody raising awareness, educating and informing us about the rare diseases, we’re happy to have played our part! If you would like to know a little bit more about what we do and the services we can provide, then visit our website at www.dmorthotics.com
