Freddie & Noah, 14 – United Kingdom

Noah & Freddie are now 14 years old.

Noah was diagnosed with PVNH at 2 years old following an MRI for his seizures. Freddie was diagnosed when he was 5. We later found out they have X-Linked PVNH associated with the FLNA gene.

They continue to manage their diagnosis and conditions exceptionally well. 18 months ago they were diagnosed with emphysema in addition to their other lung complications, but with close monitoring and being on top of their medications, they are doing really well.

They are now in their 3rd year of secondary school and are enjoying every aspect of it. Freddie was recently diagnosed with working memory problems, so he’s being supported within his lessons, accordingly. Noah loves basketball and drama whereas Freddie has a keen love for football and cooking.

They both support one another with their health, and look out for each other. Being twins gives them a special closeness, and having the same health conditions has meant they can both empathise and understand each others needs.

  • Gemma, Freddy & Noahs’ mom

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