At 8 weeks old Connie Jane Woulfe was officially diagnosed as having spinal muscular atrophy type 1, the most servere form that robs babies of their ability to move, eat, swallow and eventually breathe.
Great Ormond street hospital offered us a life line in the form of spinraza. An injection Connie has to have into her spine every 4 months.
Laying our tiny 9 week old baby on a table to have a lumbar puncture performed on her was horrendous, and to this day still is.
Spinraza has allowed Connie to live, it has allowed her to regain some movement, but her life is still so very different from other 16 month old babies. She has to have aggressive chest physio twice a day, she has to be suctioned due to her weak swallow, she is fed via a gastronomy and she is unable to crawl, stand or walk. Connie spent Christmas in intensive care at great Ormond street hospital due to a simple cold virus.
Gene therapy has been approved in the US. This means an artificial version of the gene Connie is missing is put into the body. The results in children under 2 years of age have been amazing. If Connie could receive gene therapy it would hopefully give her the opportunity to live like other children; to walk, talk and eat!
Connie is our miracle. She smiles and giggles everyday, she has just learnt to give kisses and boy is she generous with them!
If I could swap places with Connie I would, I would do anything for her, so that's why I am here, writing this, in the hope that we can raise the staggering total of 1.7 million pounds to get our special little girl a very special treatment, a chance of a normal life.
If you can help in anyway, by donating or sharing this page it would mean so much to us. We are just a normal family trying to attempt the extraordinary.
All out love,
Emma, Tim and Connie xxx
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