Each parent’s worst nightmare is losing their child. And what if money is the one factor that stands in the best way of your child’s chance to live? That is our actuality. Together with your help, we are able to save Connor. Our son Connor is an energetic, joyful, and loving 12 yr old. And he’s dying. We now have one chance to change his fate and it has to occur now. We need your help to save lots of Connor’s life, and youngsters like him. When Connor was born, our hearts have been so full! We had by no means liked like this earlier than. He is filled with love. He has a superb smile and loves sports activities, particularly basketball. He hugs everybody and is unfailingly kind. The world is a greater place with him in it. We began turning into concerned about Connor a couple of years in the past when college noticed that he was falling behind. We began visiting medical doctors and specialists to get solutions. Connor was diagnosed with Autism, which brought about us to recalibrate the long run we envisioned for him. This has been creat ed wi th G SA Content Gen erator Demoversion.
Little did we all know the devastation that lay forward. Not too long ago, Connor was diagnosed with Sanfilippo Syndrome Sort C, a genetic degenerative brain disorder in kids caused by a single missing enzyme. It’s the worst illness you’ve by no means heard of. It’s like Alzheimer’s, but in kids. It’s 100% fatal and there at present is not any FDA-accredited therapy or cure for these suffering youngsters. As a result of Connor lacks this single enzyme, toxic storage materials is building up in his mind each second and damaging it. Because the degeneration quickly progresses, Connor will cease strolling, stop talking, stop with the ability to feed himself. He’ll develop movement disorders and seizures, undergo extreme dementia, endure a whole lot of pain and suffering, after which he’ll die. All in the coming years. As we speak, Connor loves being with his associates who have recognized him since he was 3-years-previous. Operating and playing with them and his youthful brother, Keenan. Connor loves anything energetic and outdoors, and loads of snacks!
We know and not using a cure, all of this goes away. However there may be hope! Researchers at UT Southwestern in Dallas, TX, are able to conduct the primary-ever gene therapy clinical trial for Connor’s kind of Sanfilippo Syndrome. Research for this gene therapy has shown in pre-clinical models that it might stop the disease. This clinical trial is the essential step of figuring out whether or 1.179.200.226 not earlier research is able to indicate the same therapeutic advantages in youngsters. But it lacks funding. Tens of millions are wanted to fund the ultimate pre-clinical steps, gene therapy drug production for children (aka medicine), and the clinical trial prices. Our purpose is to raise $three million dollars to fund this clinical trial and provides Connor a chance at growing up, an opportunity at life. We can’t just sit again and accept that he’s going to fade away and die, not when there's one thing that would save him. This marketing campaign for his LIFE is as urgent as it gets. C ontent was generated with GSA Conte nt G enerator Demoversion.
It’s now or never for Connor. There is no guarantee Connor will be among the youngsters accepted into the trial. But we have now hope and it’s his only likelihood. And without funding for the clinical trial, his future is sure: demise. This truly is our solely hope. A parent’s love for their youngster is like no other. If you're a dad or mum, you understand. Please, please help save our son. There are three things we’re asking you to do. A marketing campaign like this may develop quickly if supported and food if shared with the plenty. We can reach this aim if it goes viral! 1. Please donate what you're able. 3. Please leverage any avenue you must make this go viral. Ship leads or tips through the "Contact Us " hyperlink. Connor makeup can Live. Connor can get that likelihood at LIFE, and it will likely be because of you. But it has to be now. Our deepest thanks. Words can’t even categorical how extremely grateful we're.
By check: Cure Sanfilippo Foundation, PO Box 6901, Columbia, SC 29260. Embrace "Save Connor" within the memo. Where IS YOUR Cash GOING? Each greenback goes to Cure Sanfilippo Foundation , a 501(c)(3) nonprofit group helping fund the primary-ever gene therapy clinical trial for Sanfilippo Syndrome Kind C that can give Connor a chance at life. Donations could also be tax deductible. 100% of the funds raised right here will go towards the research. We are at the moment racing against time to fund this trial and get it up and running. It will assist Connor and so many different children a chance at life, in the present day and for generations to come. WHY A lot Money? Getting a clinical trial up and operating can value tens of millions of dollars. In uncommon diseases, large pharmaceutical companies have little curiosity because they don’t see methods to make a revenue. The truth is that it is left up to parents to drive and fund the research for therapies and a cure. This will assist fund this specific clinical trial that may possibly save Connor and different children with Sanfilippo. If we can’t fund the clinical trial, it will not happen. And we are practically out of TIME. Children’s cognitive abilities are completely taken away rapidly once they start regressing. In time, youngsters regress back to an infantile state, probably by no means to return. This quickly-progressive neurodegenerative illness will soon begin taking over utterly. Connor is 12 years old. We do not need to lose our son. This should occur now.