Be Brave Bears is a charitable organisation run by volunteers who send personalised keepsake bears to children who are terminally ill or have life limiting conditions. Each of our bears is sponsored by businesses, groups or families, meaning these bears are free of charge to the children. Once complete each bear is placed in a special keepsake bag and given to the child complete with a numbered certificate. Once the child has received their bear the sponsor will receive a thank you photograph via e-mail of the completed bear and a sponsorship certificate with the name of the child who you have sponsored. Each bear is allocated a number and will appear on our Roll of Honour. If the child on this page has already been sponsored, but due to the timing of the previous sponsorship it has not yet been removed from this area, your sponsorship will be automatically allocated to the child next on the list (Priority order). This seldom happens but we must highlight that it can occur.
TEDDY JAMES WILLIAM TYRRELL’s Medical condition...
I’d like to nominate my son Teddy because he has been through so much in his short life, At 5 hours old he was taken in to the HDU with respiratory distress & sepsis! At 6 weeks old he was found to have a rare metabolic condition which caused Teddy to have screaming fits which caused him to have high muscle tone & this was all because he had High Lactate a condition called LACTIC ACIDOSIS! It’s a neuro/metabolic condition, Which was picked up on his first lot of genetic blood testing, He also had a Brain MRI at 8 weeks old which showed delayed myletation, (Developmental delay) A piece of corpus callosum missing & microcephaly! He also has optic nerve Hypoplasia & a gastrostomy feeding button! He has undergone 4 anaesthetics so far having a lumbar puncture done at 5 months old, He has also had a skin biopsy to check for a condition that was life limiting & thankfully it came back negative, He also had a gastrostomy feeding peg fitted in May 2018 due to being a high risk of aspirating and a unsafe suck/swallow, and then in December 2018 he underwent another operation to remove the peg and replace it with a feeding Button! He really is a amazing little boy who always has a beautiful smile on his face despite everything he goes through, He has to wear a padded helmet as He is non verbal and has severe aggression where he can’t communicate with us. We are learning mackaton but in frustration he head butts EVERYTHING. Doors walls floors myself his Dad. sister, To the severity where he bruises himself and yet still carrys on smashing his head off things, He’s had practically every single test done possible, He’s my hero and a inspiration to all that know him! He’s also just started to have absent seizures just to add to everything else he has going on, But it doesn’t stop him from being Him, He deserves the world & more for being such a courageous little boy! And lastly because the usual genetics that are done didn’t give a clear picture Teddy was entered in to the 100.000 genomes project which look for RARE genetic conditions which he had done at guys hospital and these results can take months or even years to get a result from, we are hoping that these results will give us the missing answers to his jigsaw puzzle!
A bit about TEDDY JAMES WILLIAM TYRRELL...
The first thing people will ever tell you about Teddy is he has the most beautiful smile. He is socially awkward and prefers to do things alone, He doesn’t play with Toya he has sensory problems and doesn’t like to hold anything in his hands so throws EVERYTHING, But despite everything he is the most loving little boy you will ever meet, He loves to give kisses & cuddles & is a proper little Daddy’s Boy! Everyone who meets Teddy falls in love with him, We’ve spent practically half his life between our local hospital & the EVELINA children’s hospital in London so is a very popular little boy on the children’s ward we’ve spent 7 weeks at one time in there, And another time 3 weeks etc, so he’s very well known for being the little boy with a rare condition that no one actually knows how to treat, He’s a unique little boy, A muddy puddle, And a SWAN (syndrome without a name) That’s how the medical professionals describe Teddy!
Follow TEDDY JAMES WILLIAM TYRRELL's journey here: Teddy’s Journey
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