Rubi Robalo-Sewell

Thanks for taking the time to visit Rubi's Angel Fund microsite. Rubi was born on 22 January 2009. She had a normal birth and there was no reason for us to think that there were any irregularities with her health. Around the time babies start supporting their heads, we noticed that it was very difficult for Rubi to do this. We then decided to take her to the paediatrician for his opinion. We knew something was seriously wrong, the moment he took one look at Rubi and didn't smile, as it was impossible not to smile at the presence of such a delightful baby! We had DNA tests done and sent to Great Ormond Street's neuromuscular department. The following weeks were agonizing, as we didn't know what to expect. We searched all over encyclopaedias and the internet for possible reasons why our daughter's posture was so relaxed. It never crossed our mind that from the long list of possible illnesses, the one that our daughter had was the one we chose to eliminate from the outset, because it had a name too complicated to remember: Werdnig-Hoffmann disease. It came as a shock when we had the diagnosis. At best, we thought Rubi would never walk. We weren't expecting to be told "Rubi will never go to School". In the coming months, we wished that it had all been a mix-up at the lab and the results belonged to somebody else. But with time, all the symptoms of the illness started to manifest: Rubi became weaker, her swallowing started to compromise her health, and had to be fed via a naso-gastric tube, had to be suctioned oral and nasally, had to sleep with a bipap ventilator to help with her inability to breath deeply and had a large amount of medication throughout the day to help various functions of her body. Despite all the prodding she normally had throughout the course day, RUBI NEVER STOPPED SMILING!!! This is the biggest encouragement and best memory we have of her. Rubi's body let her down on 2 November 2010, but we won't - we are Team Rubi and to honour her existence, we will always divulge her story and help fundraising to help finding a cure to other wonderful children like Rubi. So please dig deep and donate now.