MESSAGES

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11/03/2010 18:12:23 great aunt D - hampshire lovely blog annette enjoyed catching up with sophie

10/03/2010 13:27:23 Nanny Lynn - Nanny's House I AM COMING TO SEE YOU XXX

01/03/2010 13:25:57 Robbi - California USA What a loving family you are. Sophie is such a very beautiful little girl (and her mommy dresses her adorably) ! I love her sunglasses ! How blessed you all are to have her to bring out the best of your love even in your pain. How special not only bringing you all together but so many throughout the world. Would we could all bring out the very best in others with such simple and touching joy. Please give Sophie and extra hug and kiss when you tuck her in tonight. Know I am thinking of you and of her. Her beauty is radiant and shines so brightly in her and all those she brings together sharing in the gentleness of her being. Enriching every life she touches. There is nothing love cannot face; there is no limit to its faith, its hope, and its endurance. St. Paul I Corinthians 13:7 With warm thoughts and hugs to you. Robbi

20/02/2010 21:17:44 Purabi Lakhani (Rhea's mum) - Croydon I have loved reading the latest blogs on Sophie. Hasn't she been a busy little girl! Love to you all. xx

17/02/2010 13:11:55 Nanny Lynn - Nann's House Hello my little angel, nanny has been reading about you, you are so clever and looking like a big big girl now. Nanny is looking forward to coming to see you and barney soon. xxx

14/01/2010 18:45:44 Neil Patmore - Surrey, UK Mary, Matt and Gemma. Please email your email addresses to info@thesophiestory.co.uk so that we can reply. We are currently upgrading the message board to ask for an email address. The email address will be kept private but it will enable us to reply to all the messages we receive. Many thanks, Neil.

14/01/2010 10:52:43 Gemma - Bristol What a moving and inspirational story that has given me hope. My daughter is almost 4mths old and has suffered from reflux and failure to thrive since birth. An early blood test revealed anaemia and several tests later we were referred to the metabolic team at Bristol where we discovered that she has a mitochondrial condition. we are currently waiting for an appointment for a MRI scan and muscle biopsy. We went against the specialist's advice and have googled and researched as much as we can and came across this site. What a beautiful daughter you have and we hold on to the hope of having a baby who fights like Sophie x

11/01/2010 17:03:47 Marie & Matt - Deeping St James, Lincs Our son Henry passed away on Thursday 7th January 2010 aged two years & three months, he had multiple organ failure resulting from liver failure & Mitochondrial disease. Nothing could have prepared us for this, escecially as just five weeks ago all we thought was wrong was a few developement issues, mild nystagmus & epilepsy. We wish Henry had been diagnosed earlier so we could have prepared more, had more time together as a family & Maybe Henry would never have been precribed a medicine dangerous for his condition. Henry was a loving little boy with so much to give, he deserved so much more & was taken too young. Our hearts go out to everyone affected by this horible disease & we hope & pray for a cure one day. Keep up the good work with Sophies website & we wish you all the best for the furure.

06/01/2010 21:05:35 Marie and Matt - Kings College Hospital, London Sophie's story has really touched us, as our son, Henry (2 years old), is currently in PICU at Kings College Hospital in London with liver failure. He was diagnosed with mitochondrial Disease just over 3 weeks ago when we arrived at Kings. He has had neurological problems since he was 3 months old, the first symptom he had was nystagmus, then he had a spell of being wobbly. He then started to have seizures at 18 months and at 21 months he was diagnosed with epilepsy for which he was given sodium valproate. This helped a lot with the seizures but it is documented that valproate can unmask Mitochondrial Disease, as it has with Henry and his liver failure. He also has walking difficulties, being a wide gait and unbalanced and his speech is delayed, he also has a slight tremor. He is a gorgeous little boy who is very bright, affectionate and loving. We pray for a miracle and our thoughts go out to all families affected by this terrible disease.

04/01/2010 22:50:23 Dawn - Cornwall I am so glad that I came across your website, Sophie is a beautifull happy little girl.I have a 7month old grandaughter with similar symptoms, hypotonia, reflux, blindness, seizures ect. She has as yet not been diagnosed and has had numerous blood tests, Mri scan ect but all have come back clear.Mitocondrial Disease has been mentioned as a possability, we are now awaiting an appointment at Bristol Hospital for a muscle biopsey. Needless to say my daughter is frantic to find out what is wrong with her little girl, I will keep watching this site and wish you all the best. My prayers are with you and your family. Dawn xxx