Beauden Brave

Beauden Brave

As Beauden Brave, we actively fundraise and encourage others to fundraise for the Tiny Lives Trust and the Beauden Brave Fund administered by the Newcastle Hospitals Charity. Anything raised by Beauden Brave is split evenly between the Tiny Lives Trust and the Beauden Brave Fund administered by the Newcastle Hospitals Charity. Beauden Brave does not handle any money, all donations go directly to the Tiny Lives Trust and the Newcastle Hospitals Charity. The Beauden Brave fund administered by the Newcastle Hospitals Charity is used to fund:

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- improving and delivering end of life care on NICU at the the RVI in Newcastle upon Tyne;

- improving and advancing the care of babies born with genetic disorders; and

- improving and advancing the care for people with Myotonic Dystrophy (the rare genetic disorder that Beauden had).

More information is available at beaudenbrave.org

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Beauden Philip Turnbull

Beauden ('Beaudy' to Daddy) was born early on 25th February 2021. His due date was 22nd April. We thought we were experiencing a normal pregnancy until 23rd February, when Magda had earlier than expected signs of labour. Efforts were made to keep Beauden as a bump, but he was ready to arrive and did so only a couple of days later on the Delivery Suite at the RVI, with a Neonatal team on standby. He was a whopping 3lbs 11 ounces.

As quickly as he arrived on that Thursday morning, he disappeared off to the Neonatal Intensive Care Unit (NICU) which would become his home until the 4th May, when he passed peacefully in our arms.

The 9 weeks and 5 days he was here, were some of the most difficult and testing times for us as parents. It was discovered that Beauden had a rare genetic condition - Congenital Myotonic Dystrophy Type 1 (CDM1). Because of his fight, he has not only saved his future brothers and sisters from the same condition, but has ensured existing family members are tested and monitored for complications associated with Myotonic Dystrophy. In his short spell he has done so much for others.

He gave Mummy and Daddy the gift of time, time we spent loving every inch of him. We will carry him with us everywhere and nothing makes us prouder than to be Beauden's Mummy and Daddy. We owe him so much.

NICU was his home and home is found in people. We can't praise all the people who 'work' (which seems like such an inadequate word to describe what they do) on NICU enough. They were holding our hands every step of the way. No parent should have to face what we have, but if they do, people like those found on NICU should be there to guide them.