- Electromicroscopy of buffycoat layer
- Tripeptidylpeptidase 1
- Palmitoylprotein thioesterase 1
- neuroaminidase on white cell enzymes
- oligo-saccharides in urine
- Mitochondrial mutation screen
- DYT11 - episolon sarcoglycan gene
- PANK2 gene
- Plasma for antibasal ganglia antibodies, lupus screen, ESR, ERP
- 24-hour urine screen for VMAs
- full thickness suction rectal biopsy
- nerve conduction study
Didnt mean much to us either, but these doctors know what they are doing, we absolutely believe 100% in every medical person we have met! Marvellous people!
On Friday afternoon, Lew and I popped across to see our friend Helen and to meet her very mad cat Tobey! We had a lovely time, and some lovely food, thank you so much Helen!This morning I heard from our friend from Musical Minis (Sam's mum) who has offered to do some fundraising for Lewis' Fund this year. Sam's mum let us know about a fashion show she is hoping to arrange with the famous Doncaster store HOMEBOY in the next couple of months to raise money for The Lewis Jeynes Fund. At the same time, we would hope to raise awareness of Lewis' condition and also raise money and awareness of other children in the Doncaster area who may also have undiagnosed conditions and who would benefit greatly from specialist sensory equipment.
The Gentlemens Evening held on Tuesday was an AMAZING success! Around 240 people attended the event at the Holiday Inn (formerly Moathouse) in Doncaster to listen to the guest Speaker, Paul Merson, to enjoy the comedian, and to take part in the auction to sell off sporting and other memorabilia, not to mention the 3-course meal!! An awesome £4,000 was raised for The Lewis Jeynes Fund. With the money raised so far we have more than enough to furnish Lewis' new room with sensory and specialist play equipment.
SO THANK YOU VERY VERY MUCH from all of us for the huge generosity of all those who attended the Gentlemens Evening and purchased auctioned items or simply made a direct donation and also to Tony Gregory, Colin Wilson and Gary Marshall for all their time, effort and hard work in putting together the event.
Today .... Manchester United play Chelsea in some cup of other!!!