This week Tilly underwent further test's on her main condition and some of the finding's were confusing to the experts.  Also, medication for problems she has experienced over the past 12 months have been prescribed and we hope to see improvement(s) over the next 4-6 week period.

It has been difficult for Tilly as most of the children staying at the Inn are able to walk, run and play so this has upset her as her friends at school have a better understanding, as they have known her for so long, and treat her so well by including her whenever possible.  The staff at the Inn are fabulous and are trying to include Tilly where possible. 

She has received a number of emails from her friends and we are printing them for her to read each day, which puts a big smile on her face.  I cant tell you how much she is missing all her friends, which is sad but expected as they treat her so well.

We have spoken to the Inn about staying here rather than renting an apartment 'off-campus' for as long as possible.  We have suggested donating funds to the Inn, rather than giving profit to a landlord, for the time they allow us to stay here whilst not under the Research protocol.  By doing this it will be going back into helping other people in similar situations which has to be a good thing.

The Inn is an amazing place providing support to children with very rare conditions and their families who care for their needs.  The funds, that so many people have helped us to raise, will be better spent this way and we will be close to the experts in case of any, god forbid, problems that arise 'post-surgery'.

The local community here is amazing and donates food, equipment and tickets for special events on a daily basis.

Last week we took Tilly and Oliver to an Ice Hockey match and Oliver loved it but Tilly put on her headphones and kept saying 'RUBBISH'!!!

Tomorrow I am taking Oliver to the local 'YMCA' to play his first ever soccer, sorry football, game and after we are driving to Richmond as they are both going to see 'High School Re-Union' on Ice.

To add to Saturday, Oliver and I have been given free tickets in the Club Class area for Sundays match at the Washington Redskins!!!  I bought him the shirt today and he is very excited.

We are very nervous about this week as surgery looms, Wednesday, and are both hoping that this leads to the hope of so many, especially our little darling 'Tilly'.

Please keep sending your messages as we really appreciate them and they are so important in lifting the spirits of Tilly during a very nervous time.

Our thanks to you all.

Colin, Debra, Oliver and Tilly