hi my name is Linda im a carer for my daughter Rhianna she's 14yrs old , we both have cleft pallets and pierre robin sequence but Rhianna has scoliosis and hyper mobility and a fragmented sleep pattern also , we take her addenbrookes every six months on our last visit we was told she will need the operation as her curve is now 40% we go back in january ,im waiting on results for loeys-diez syndrome as we know Rhianna has another syndrome .
hope to chat with you soon i find it very frustrating and lonely being a carer my friends think i cope but the truth is im finding it hard but feel selfish moaning as it's Rhianna going through it all not me ,thanks for letting me join your group
chat soon
hope to chat with you soon i find it very frustrating and lonely being a carer my friends think i cope but the truth is im finding it hard but feel selfish moaning as it's Rhianna going through it all not me ,thanks for letting me join your group
chat soon