Growing Tiana's independence
Donation protected
We are raising money to give Tiana some independence, make adaptions to the family home, get her the equipment she really needs and generally support her with rehabilitation therapies etc that will give her the best possible outcome to be independent as an adult after her recent fronto/parietal hemispherotomy(removal of 2 lobes of her brain) 
Our current situation:
Tiana back in January 2020 went through a major 10hour brain surgery where her right frontal lobe and parietal lobe were disconnected from her brain. To put that into perspective it's around 1/4 of her brain. This area of brain covers cognition, memory, mobility, vision and much more. This area of Tiana's brain was already damaged due to a gigantic brain hemourage a few days before birth causing her hemiplegic cerebral palsy, epilepsy, autism, moderate learning difficulty, speech impairment, partial sightedness, Visual processing difficulties and sensory processing difficulties . Tiana's epilepsy was drug resistant and we were told that no matter what the only chance of seizure freedom would be surgery and this could potentially save her life. Tiana's surgery could not be done local and we had to travel 2 hours to the specialist Neuro unit in Bristol children's hospital where we were told we would be for approximately 1 month.
Aswell as this we were told that the surgery ,like any, had it's risks. This surgery had risks of stroke, infections, further disability, memory loss and even fatality. This was the hardest thing to agree to but it needed to be done. Tiana wanted the surgery as she could see the potential it could give her in life and to have seizure freedom is every person living with epilepsy's dream. Infact not only did Tiana ask for this surgery she was so excited she would bounce with excitement, squealing and telling people what was going to happen to her brain (in gory detail; Biology is Tiana's favourite subject). Anyone that met Tiana around this time could not believe the excitement of having her brain "dissected" as she would put it.
After a gruelling 10 hour surgery, 4 days in high dependency and 2 weeks of non stop sleeping, barely eating, barely drinking, no laughter and minimal talking Tiana started her revovery. Tiana had to relearn to toilet, sit, stand, roll over, walk. Everything had to be learnt all over again. Tiana has shown fantastic strength in all of this. We have now been in hospital for 6 weeks. Tiana can now sit, stand(aided) walk a short distance (aided), use a toilet(aided), feed herself. However, many changes have happened Tiana now needs help with most things as she has lost all use of her left wrist and hand, most of the use of left arm, her short term memory has suffered and she gets confused easily & she can no longer walk any distances, she is struggling with major anxiety making herself physically sick at the fear of being in hospital, being out of routine and missing her beloved pets. We have been granted weekend leave which is where we are still admitted but for the weekend we can go home to start preparing for Tiana's discharge. We have an estimation of around another 4 weeks until actual discharge (fingers crossed this won't be longer as finances are so tight and I am not sure how much more she can handle emotionally).
During this last 6 week's Tiana's dad has returned back home to go to work after only a few days off with annual leave. He has been so worried being at home 2 hours away from his poorly baby girl but the bills don't pay themselves and Tiana's younger sister needs some normality. He has been an absolute rock holding everything together back home. I have obviously been by her bedside for 6 weeks. Tiana's sister has continued with school and as much normality that can happen in our situation but the poor thing hasn't known if she is coming or going and at just 7 years old has been super tough on her too. So she has been an absolute mega star and I can not stress how proud I am of both of these girls.
The help we need and what the money will be for:
Now here is my plea. I have never been one to ask for help EVER. I am more of one to give and I totally get that nobody can afford much these days but I think now is the time when all I can do is ask for help. I can not tell you how much my stomach is churning asking fir this help but it has been recomended by hospital Liaise.
Tiana needs some adaptions done in and outside the house. We are currently under discussion for things that can and can't be provided for by her occupational therapist. We need to put in new ramps, supportive chairs, kitchen aids, grab rails, toilet frame to name a few.
She needs a new wheelchair as she has much lower mobility than before so to regain some independence she needs an electric wheelchair, some stimulation toys etc for her arm which she has extreme limited use of and in fact no movement from the arm down. We need to privately pay for hydrotherapy, possibly some extra physio therapy if Torbay can't offer enough. We literally want to kit our home out with every adaption needed and give her every therapy going that will give her the best life that she deserves. She has been through so much stress, discrimination, battles and traumas through her 14 years that I think now I need to ask for help as she deserves this.
This as a family will alleviate so much pressure off of all of us. First off it will help us help her, give her independence, give her the chance to do it all for herself and not have others do things for her which frustrates her so much. Also, This has been a very very expensive 6 weeks for us and will continue to be expensive for us. As we don't receive any income related benefits we don't fit the criteria for the travel expense/hospital grants etc. This has put us out of pocket so much at this difficult time for us but as money just does not compare to your child's health we have been putting it to the back of our minds until now. We need to not only sort out our general finances but also find funds for everything listed above and so many charities I have approached haven't been able to help so this feels like our final step. After taking advice from the liaise team we have decided to ask for public help. This is so out of my comfort zone but pride will always take a back seat when it comes to doing my best for her. Please if you can help us give our girl the best chance at life we would be extremely grateful. She has the biggest heart & biggest smile and she deserves this more than anyone else I can think of.
Thankyou
Our current situation:Tiana back in January 2020 went through a major 10hour brain surgery where her right frontal lobe and parietal lobe were disconnected from her brain. To put that into perspective it's around 1/4 of her brain. This area of brain covers cognition, memory, mobility, vision and much more. This area of Tiana's brain was already damaged due to a gigantic brain hemourage a few days before birth causing her hemiplegic cerebral palsy, epilepsy, autism, moderate learning difficulty, speech impairment, partial sightedness, Visual processing difficulties and sensory processing difficulties . Tiana's epilepsy was drug resistant and we were told that no matter what the only chance of seizure freedom would be surgery and this could potentially save her life. Tiana's surgery could not be done local and we had to travel 2 hours to the specialist Neuro unit in Bristol children's hospital where we were told we would be for approximately 1 month.
Aswell as this we were told that the surgery ,like any, had it's risks. This surgery had risks of stroke, infections, further disability, memory loss and even fatality. This was the hardest thing to agree to but it needed to be done. Tiana wanted the surgery as she could see the potential it could give her in life and to have seizure freedom is every person living with epilepsy's dream. Infact not only did Tiana ask for this surgery she was so excited she would bounce with excitement, squealing and telling people what was going to happen to her brain (in gory detail; Biology is Tiana's favourite subject). Anyone that met Tiana around this time could not believe the excitement of having her brain "dissected" as she would put it.
After a gruelling 10 hour surgery, 4 days in high dependency and 2 weeks of non stop sleeping, barely eating, barely drinking, no laughter and minimal talking Tiana started her revovery. Tiana had to relearn to toilet, sit, stand, roll over, walk. Everything had to be learnt all over again. Tiana has shown fantastic strength in all of this. We have now been in hospital for 6 weeks. Tiana can now sit, stand(aided) walk a short distance (aided), use a toilet(aided), feed herself. However, many changes have happened Tiana now needs help with most things as she has lost all use of her left wrist and hand, most of the use of left arm, her short term memory has suffered and she gets confused easily & she can no longer walk any distances, she is struggling with major anxiety making herself physically sick at the fear of being in hospital, being out of routine and missing her beloved pets. We have been granted weekend leave which is where we are still admitted but for the weekend we can go home to start preparing for Tiana's discharge. We have an estimation of around another 4 weeks until actual discharge (fingers crossed this won't be longer as finances are so tight and I am not sure how much more she can handle emotionally).
During this last 6 week's Tiana's dad has returned back home to go to work after only a few days off with annual leave. He has been so worried being at home 2 hours away from his poorly baby girl but the bills don't pay themselves and Tiana's younger sister needs some normality. He has been an absolute rock holding everything together back home. I have obviously been by her bedside for 6 weeks. Tiana's sister has continued with school and as much normality that can happen in our situation but the poor thing hasn't known if she is coming or going and at just 7 years old has been super tough on her too. So she has been an absolute mega star and I can not stress how proud I am of both of these girls.
The help we need and what the money will be for:
Now here is my plea. I have never been one to ask for help EVER. I am more of one to give and I totally get that nobody can afford much these days but I think now is the time when all I can do is ask for help. I can not tell you how much my stomach is churning asking fir this help but it has been recomended by hospital Liaise.
Tiana needs some adaptions done in and outside the house. We are currently under discussion for things that can and can't be provided for by her occupational therapist. We need to put in new ramps, supportive chairs, kitchen aids, grab rails, toilet frame to name a few.
She needs a new wheelchair as she has much lower mobility than before so to regain some independence she needs an electric wheelchair, some stimulation toys etc for her arm which she has extreme limited use of and in fact no movement from the arm down. We need to privately pay for hydrotherapy, possibly some extra physio therapy if Torbay can't offer enough. We literally want to kit our home out with every adaption needed and give her every therapy going that will give her the best life that she deserves. She has been through so much stress, discrimination, battles and traumas through her 14 years that I think now I need to ask for help as she deserves this.
This as a family will alleviate so much pressure off of all of us. First off it will help us help her, give her independence, give her the chance to do it all for herself and not have others do things for her which frustrates her so much. Also, This has been a very very expensive 6 weeks for us and will continue to be expensive for us. As we don't receive any income related benefits we don't fit the criteria for the travel expense/hospital grants etc. This has put us out of pocket so much at this difficult time for us but as money just does not compare to your child's health we have been putting it to the back of our minds until now. We need to not only sort out our general finances but also find funds for everything listed above and so many charities I have approached haven't been able to help so this feels like our final step. After taking advice from the liaise team we have decided to ask for public help. This is so out of my comfort zone but pride will always take a back seat when it comes to doing my best for her. Please if you can help us give our girl the best chance at life we would be extremely grateful. She has the biggest heart & biggest smile and she deserves this more than anyone else I can think of.
Thankyou
Organizer
Vibrant Hair
Organizer
England
