This will come as a shock to most as we haven’t made it common knowledge other than to family and close friends, but given Schizencephaly awareness day is coming up on 19th May, we figured this was a way to raise money for this incredible charity.

So here goes...

During our growth scan at 34 weeks pregnant, we found out the most devastating news - our baby boy Rubén had fluid on his brain, which after an MRI through mummy in Alder Hey, was diagnosed as a rare brain disorder called Schizencephaly. Along with this, we were told our little prince had hydrocephalus and pogymicrogyna. All imperfections within the cranium, to which he was born with and just ‘made that way’.

The diagnosis of the disorder was supposedly that bad that we were given the choice to terminate at 35 weeks pregnant! This was never an option for us. We’d spent 34 weeks growing our little bundle, and we’d go on to love, cherish, adore and support him in his life outside the womb no matter what condition or disability he had. Our baby boy Rubén is now 4 months old and is thriving beyond belief, meeting all milestones we we’re told he never would. Our little warrior - our miracle. We’ve a long way to go yet but the fight continues, with many affects only becoming evident as he/his brain grows - although we remain super hopeful.

This amazing charity We Are RARE, INC. is a (RARE, Awareness, Research and Education) is comprised of board members including parents, medical and legal advisers who volunteer their time to reach out globally to advocate for rare  brain disorders such as Schizencephaly, Plagiocephaly, Microcephaly /Hydrocephalus/macro-cephalic disorders, Lissencephaly and traumatic brain injury prior to birth, underlying conditions associated with rare cephalic disorders/cerebral palsy such  as feeding dysfunction, seizure control, Alternative therapy and vision impairment information.

RARE works closely with leading medical physicians that support research and education for therapy and treatment. They collectively set up events and community support as well as professional education programs throughout the year to help families/those affected. Ultimately, raising awareness, research and education for Schizencephaly and other rare neurological disorders.

Mummy, Daddy and Rubén are walking 50 miles in 15 days, rain or shine - 1st May to 15th, ahead of Schizencephaly Awareness Day. It is to this note that we ask if you can please spare any pennies, no matter how big or small to sponsor us and help raise funds for this amazing charity. We know times are hard and very uncertain at the minute, but please know we appreciate any donation no matter how small. We are Rare and their ambassadors have literally been our lifeline and continued support through every step since initially being diagnosed. We can’t thank them enough!

We thank you in advance, from the bottom of our hearts xXx

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