Rex’s Story

Rex was born in March, 2022 in Denia, Spain. He was born fit and healthy, according to the standard tests completed by the health services. Within a few weeks, Rebecca and I, Wayne suspected something wasn’t right with him. He wasn’t eating properly, not paying attention to anything, and generally not doing anything you see/hear typical baby’s doing. We was told everything was ok and were just worrying about nothing, with us being first time parents.

As time went by, milestones were being missed – he wasn’t able to crawl, roll, play, and he wasn’t curious about anything. Again, it was “nothing to worry about” and we just had to try harder.

As months passed by, it wasn’t until we were all on our first family holiday in Mallorca that things started to change. He had his first epileptic seizure. We didn’t understand what was happening and neither did any of the hotel staff – as far as we were all aware, he was just choking on some saliva.

He was sent to the hospital in Inca and then eventually transferred to the hospital in Palma that was more suitable for children. There, he was diagnosed with epilepsy. From that moment, our holiday and lives changed.

When we arrived back home, we had appointments at the local hospital in Denia. From there, we had time ‘booked’ for La Fé, Valencia for testing to see what was happening with Rex.

After genetics testing, EEG’s, reflex tests, MRI’s, etc etc, we waited 3 months. The longest 3 months of our lives. After 3 months, the genetics test results came in. Rex was diagnosed with PIGA-CDG. The first and only recorded case in Spain.

We knew nothing about this disease. Hardly anyone knew anything about it, and probably still don’t know much about it now. We hit google and facebook groups desperate for information. We eventually found it and none of it was good information.

Basically, no boys found with the disease have reached adulthood. Most of the boys die before the age of 4 and it brings along with it lots of other problems, conditions and diseases. In Rex’s case, it brought him:

  • Epilepsy – with seizure types of:
    • Grand Mal
    • Absent
    • Focal
    • Tonic Clonic
  • Low muscle tone (Hypotonia) in his neck
  • Low motorskills – both major and minor
  • Sleep disorder
  • Cerebellar atrophy
  • Paroxysmal Nocturnal Haemoglobin (PNH)

Some things could be controlled by drugs, but unfortunately Rex had a high tolerance for all of them, meaning after a few days they’d no longer work and would need to be increased or changed for something stronger.

After almost a year of Rex fighting and battling with this life and condition, he passed away in his sleep peacefully – 01:37 29th September 2023. May you forever rest in peace.


3 responses

  1. Victoria Avatar

    We were so pleased we got to meet you to hold you and squeeze your tiny hands, your parents were and are just as brave as you, fighting every day right along with you. Heaven needed you more than we did here. Such a beautiful, special boy who brought so much joy to so many without even realising. Forever in our hearts and will be greatly missed for eternity. All our love victoria and Brian xxxxx

  2. Victoria Avatar

    Rebecca & Wayne, thank you for sharing your beautiful son’s journey with us. Rex was a brave and inspirational little boy who showed us all what really counts in life. He embraced everyday no matter the struggles he faced. RIP gorgeous boy. You will always be remembered by all who had the privilege to know you xxx

  3. Natalie Avatar

    What a little soldier! Cared for by the strongest, bravest most loving parents. Loved so much always and forever! 💙

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