I'll try and keep this fairly short!! Just over 2 years ago we found out that our little girl had a duplicated chromosome, a very rare condition that at this time there were only 14 others with this exact duplication in the world. After seeing Jersey's paediatrician and geneticist we were told that Jersey was unlikely to walk, talk, recognise the difference from me as her Mummy to a random stranger. She would need to have her organs tested as her condition had shown that some didn't function properly, including her sight and hearing, the list of negative things connected to this condition seemed endless 😥😥
After a lot of tears, mainly on my part!! Gavin Hardisty, some VERY good friends and family kept me positive and after 4/5months of going through the normal channels as to what was on offer for Jersey we decided to look into alternative therapies, we sought out others with Jersey's condition and those that have done ABM neurodevelopment, Cuevas Medek therapy, they have managed to make huge progress in catching up with the "normal" milestones!!
The last 18months we have travelled a lot up and down the UK working with the few practitioners that offer these therapies and Jersey has responded so well to these! But we have now been offered and accepted a place to see a specialist over in America, she is the founder of one of these therapies, it is a great opportunity for Jersey to get the best programme and bring it back to work alongside what she is doing now. These therapies are not NHS recognised but they have proven to work with such a wide variety of people with rare conditions and this is why we cant let this amazing programme for Jersey pass us by.