Hi my daughters name is Rhiannon ,
she he has charge syndrome she can not walk un aided she can not eat orally and she can not hear with out the help of a bone conductor hearing aid . We are still not sure exactly what Rhiannon is seeing in her so called good eye .
she aspirates and can not eat any thing through the mouth so she has to be fed via a machine through the stomach which takes 1 1/2 hours to feed . I hardly get sleep through her coughing in the winter months I am her only career . Rhiannon has an older sister that is s handful but getting better she is very intelligent and needs constant stimulation and play and because of Rhiannon it is hard to do both all the time thank God for school . Now Rhiannon can not go often to the school she is in a special school as if Rhiannon gets sick her leukocytes don't go back uP and have not since she was born , so
i have to not let her get sick as her immune system
is low she misses out on her physio and education when not being at school on the two day that she goes she misses out through sickness it's easy for her to get ill if she vomits ,which used to be every feed until I took matters in to my own hands :) now it less often but still happens she can aspirates if vomiting and cause sever chest infections, pnemonia or death so I have to be careful with her not to get sick often as she needs help with breathing at times to . Because she can not walk we need an area for her to play I tried doing this my self,
and the
team here from at Bridget's has been helping support us I would like to
lift their burdens by asking you to help please as they have many family's not just us . We sit in side every day except the area I haves de a small
plau area how ever Rhiannon can get imto
things there the tiles she rubs her teeth s d face in until she bleeds if I don't catch her quick enough and we have rocks that she could home on. Do it's hard to just let her play . We need an area for her to be free in so I was hoping because this is s life time thing I was hoping to design an indoor play area like play centre so we can get physio equipment in and play toys that are good for physio to help her develop a TV and a big ball pit as she lived it when we went to
an indoor play centre a couple of times how ever she got very very ill so I know she would love this and something's to
climb on .she loves puzzles and shapes a light board would be ideal too
She needs table and chair , walker . I was hoping to get poured rubber so if she tries to walk she won't get hurt and she needs special educational things like sensory and Auslan things such as DVDs or books or apps so you can see we need a lot and with a one wage home it is hard to get these things if you would like to send care packages or donations please feel free as we would be greatful for any support that you give . We also have high electricity bills which are from
charging her machine and having a electric heater in at night as she coughs worse with out it .so you can see we need help oh yes our yard Is terribly over grown and we need to clean it up as it is becoming an eye sore . And because I live in the house day after day and it's dark in here it would be really good to have some light to ease of the electricity bills too we would need two sky lights that would be a blessing as I use mirrors from our side to reflect the sun in my house it's really not good . So please we are worn out and with no family here to help we could really use some help
i don't normally ask for things for myself but we need this so please help and for all this we also need land and shed to put this play area on so I can get my daughter on track i
we were also
looking at a trampoline a safe one that zips up so my daughter would not roll off if on it though she can't stand she loves the feel of it . please help us through any way you can weather it be a small amount of money or large weather it be a sensory equipment or toys or educational things for special needs or any thing I listed above it would be amazing and a dream come true I'm putting this up with no real thought that any one will donate but minicams have happened to others do I was hoping it could happen to us . I only want some where my daughters can at with out getting sick any more and hospital trips I'm over them . So
If you help you have helped to change our lives it's so hard right now as Rhiannon is just getting more and more frustrated with being stuck in the same area all the time and do sm
i I have no friends that visit except the lady at the Bridget's team they are amazing . Thank you for at least reading . Please find it in your heart to help us in not good at wording things well . How ever we do need this help as im
not working and and no extra income as I'm honest and not getting a hand out is hard when I see people that do t need it get it please help me to help my daughter I'd be so greatful and keep you updated with the progress it seems a lot but if you really look at the situation no sleep through night and getting two girls ready for school it's extremely hard on days of no sleep plus all the extra parenting duties and house . The girls father and my self were not expecting this at all as we planned for me to return to my new position in the accounts department which I had worked so hard to achieve coming from the ground floor up into the office and having little education this was a dream come true for me but after my children I can't work with the amount of sleep I get as I don't function well. As I was saying we got our house thinking we would both be working to help with the bills after I had children I would go back to cover bills we never thought this would happen we worked so hard to cover the future not thinking this would happen my beautiful babies I love but Rhiannon is time consuming trying to do her exercises plus trying to teach her and now trying to entertain her more than ever it's just heart breaking we worked so hard and now it's all gone our marriage suffered and I sleep seperatly and I can't go out and do noemal things families do as its extrly hard having one car of our own some times we go in the fathers car so he can spend time with the girls which requires us to swap car seats over all the time as petrol costs have to be minimised for schooling and appointments at the hospital . I have to pay tolls to get there I some times go the long way depending time of appointment my car needs servicing which has not been done as the emitions light keep coming up I was told it would cost $2000 just to fix it and where do we get that money from so I am appealing for help for a lot of reasons and no matter how you help it will be very appreciated In advance I thank you for your kindness not that I'm really expecting any one to help I just thought I'd try .