Wednesday, 4 October 2017

Become more metabolically aware.

One of the main reasons we created www.faithforhope.com and www.otcdeficiency.com was to try and create awareness through Alyssa's story, Awareness can help people recognise the symptoms and can save children like our daughter or less effected Adults who are still at serious risk of morbidity and mortality, These sites have been created to try and help people become more metabolically aware and to help them to recognise the symptoms, If people involved with Alyssa had been metabolically aware Alyssa may have never nearly died or suffered a terrible brain injury which has greatly impacted her life, so please take a moment to check out the site, it might help save you or someone you care about xx

Saturday, 10 January 2015

Big thank you to Tree of Hope

I want to say a Big thank you to Tree of Hope and all their amazing staff and encourage people to visit there site, Tree of Hope offers hope to the families of sick children in the United Kingdom and Ireland who need specialist medical surgery, treatment, therapy and equipment in order to free them from suffering, giving a better quality to their young lives.

When Alyssa suffered a severe brain injury after coming so close to death, she couldn’t even move her eyeballs at first but then slowly began regaining some control. She was sent to Tadworth for 3 months for rehab but due to the high cost of Tadworth the primary care Trust wouldn’t fund her with the therapy she much needed any longer because of budgets and she was sent home after just 3 months and then once home her therapy was unjustly reduced once again to if lucky once a month again because of budgets even though this would have a negative effect for her recovery.


To do anything independently again she needed therapy and equipment, to be able to walk, talk, use her arms and legs, control her head, feed herself , and roll in bed, She waked each day trapped in her own body that wouldn’t do as she tells it. As parents we were at a loss, we were adapting to Alyssa having a brain injury which left her profoundly disabled with constant 2:1 care needs and were on the go 24/7 and then some while dealing with the grieve of seeing our little girl suffer so much, Alyssa needed long term support with therapy from a paediatric neurological physiotherapist, OT and speech and language weekly at least but a paediatric neurological physiotherapist was £120.00 per session, Occupational Therapy £70 an hour and speech and language £65 a session which was £1020 a month we just didn’t have, as parents we were completely devastated we were already starting to see our daughter regress because of the lack of therapy.

Tree of hope stepped in and gave Alyssa £500 for therapy straight away to stop that regression and gave us a way to fund raise through them, people’s Faith was now my daughters Hope and every penny raised went to Tree of hope and Alyssa’s therapist’s invoiced them, our daughters quality of life has continued to progress as a result while we fought the unjust decision to reduce her therapy, After a year and a half of fighting MCH, the ombudsman ruled that there had been an injustice to Alyssa when her therapy was reduced, The LA have now agreed Alyssa’s finalized Educational statement which says Alyssa needs weekly physio and SALT and fortnightly OT,

The LA have agreed to provide it in the term time for a school year and also has agreed to provide daily conductive education in the home for her education, the money left in Tree of Hope is therefore needed for equipment and non-term time Physiotherapy as a break in Alyssa’s rehabilitation could hinder her progress, we appreciate everything everyone has done for Alyssa, any money not spent in Tree of Hope for Alyssa would be used for other children that need it.

Without Tree of hope Alyssa would have regressed and never gained as much quality of life as she has since her brain injury, please visit and share their site, there are many children out there in the United Kingdom who need Help that will become silent victims of this government’s austerity cuts, little children are being denied what they need for a better quality of life, our whole life was turned upside down in 24 hours when our daughter almost died, we didn’t see it coming and could never have predicted such a tragedy, when your child suddenly needs 2:1contest 24 hour care you have to give up your work and even your home, this is a nightmare any parent in the United Kingdom could find themselves in and its things like Tree of hope that will be there to help your child , so please raise as much awareness of Tree of hope as you can !


                                             http://www.treeofhope.org.uk/



Wednesday, 18 June 2014

Teaching Alyssa to feed herself again.



Eight months ago Alyssa was unable to use her arms.  They were clenched to her sides and she didn’t seem to know what they were for.  She would not reach out, weight bare or do anything with them.  Our therapists from Medway Community Healthcare just kept telling us to make her weight bare and move things far away to encourage her to reach for objects, this was not working as she would not weight bare and didn’t know How to use her arms! She hated her arms being touched and would move out of side sitting.  Although our OT from MCH has been helpful in many ways, and trying his best, we seemed to be getting nowhere with actively using her arms. We was at a loss we didn’t know what to do so with Tree of hopes support we brought in a neuro OT.  This made a huge difference!




Alyssa reaching.

Our private OT Karen explained Alyssa felt unsafe and showed us different ways and techniques of helping Alyssa.  She explained to reach out you have to teach tiny increments, by holding her elbow and helping her reach further and further until she could do it alone.  She made us finger supports and tried various therapies.  Alyssa began reaching out with one hand, she began to accept smaller weight baring and tolerated us touching her arms.  Our private physio suggested constraint therapy as Alyssa’s brain was neglecting her left side.  The improvements from this were mind boggling, she began to reach and grasp with both hands.  So we decided to start trying to teach Alyssa to learn to feed herself again.




It was very hard at first as I had to physically hold a spoon and her elbows and guide her hand into the bowl, then her mouth.  With the support and guidance of Karen Alyssa began reaching out for wotsits.  She did so well Karen told us it was time to progress her to reaching for one wotsit on her tray.  I would guide her hand and she would independently pick it up and put it in her mouth.  With her eating from a bowl Alyssa figured out how to pull the spoon into and out her mouth so now I just guide her hand into the bowl.


We wanted Alyssa back on finger food and with the support of our dieticians we got prescription protein free food.  Although I could physically feed Alyssa a sandwich I knew she wanted to do it herself.  We began with bread, which crumbled so I toasted it.  She has done so well this week with her toast.  Today I gave her ciabatta and she shocked me by putting her hand in the plate and picking up one piece at a time and eating it alone with no help.  I was actually late filming this as she had had a whole plate of ciabatta she had already eaten.  She is now grasping her cup as I tip it to her mouth so that will be my next step.  This little princess astounds me with her determination and courage and we wanted to share her progress.  The video is below.






Wednesday, 8 January 2014

Healthcare children’s therapy

This New Year arrives with new hopes, this time last year Alyssa had already lost much of her therapy as Medway Community Healthcare children’s therapy had reduced it, to our surprise we found that there is no NHS neurological rehabilitation for children under the age of 16 years old. (there is for 16 and above)

When Alyssa was at the children’s trust in Tadworth for her short time we witnessed a whole accommodation which was closed because many Primary care trusts would not fund children so the reality is many children who suffer brain injuries never receive the neurological rehabilitation they need, we have witnessed poor little children who bodies have set and unable to move at all because they were returned to their local community’s and hospital without any adequate therapy.

Tadworth the children’s trust is for the fortunate few children who are lucky enough to get the funding,  draft NHS figures (The NHS’s draft service specification for paediatric neuro-rehabilitation, published in December 2012 ) reveal that around 40,000 children suffer brain injuries every year in the UK, acquired brain injury is defined as an injury to the brain caused by events after birth, rather than as part of a genetic or congenital disorder. Road accidents are a common cause of acquired brain injury in children and young people, but other causes include falls, assaults, meningitis, brain tumours and cardiac arrest.

Tadworth The children trust are only able to help a few hundred of those children each year and since there is no NHS neurological rehabilitation for children under the age of 16 the other children get an inadequate service for their needs.

Our daughter Alyssa who was only fortunate enough to get three months at Tadworth before our primary care trust took away her funding  was like many other children left to a service which isn't funded for neurological rehabilitation.

Our Medway Community Healthcare (Company number: 07275637 ) - Children's therapy who reduced my daughters therapy is a company that gets a set amount of the NHS commissioners ( Primary care trust ) who are basically paid a lot bean counters, so while my daughter goes without the therapy she’s needs from the NHS there are shareholders making a profit on of her back, its privatisation with the NHS paying minimal for the service meaning our children suffer. MCH Claims to be a community interest company yet In 2013, they made a post-tax “profit” of £1,679,520 on a turnover of £52,020,600 (up 5% from 2012) after reducing Alyssa’s therapy that she needed to gain any quality of life back which forced us to fund raise, showing they were maximizing profit for shareholders rather than having primarily social objectives.

Our Community Healthcare got stealthily privatised about two-three years ago, its most likely happened across the whole of the UK in many places,

How my daughter was denied that which she needed to just be able to move again or have any quality of life will be denied to anyone's child unfortunate enough to suffer from a brain injury across the UK, when they reduced her therapy telling us it was budgets they tried to cover themselves when we complained to the department by blaming our daughter saying it was because she wouldn't improve any more was the reason her therapy was reduced, of course without therapy she wouldn't recover so they were self-fulfilling, but luckily after the kind public donated enough so Alyssa could receive weekly private sessions which has helped improve her quality of life.

Medway Community Healthcare which is a private company now gets a set amount from our PCT (NHS) which they have to work within and profit from, if the Medway Community Healthcare say a child won't improve to justify reduction of therapy due to limited budgets the pct (NHS) support their decision because they have budgets to protect being the commissioners, the deal between them both works to benefit both and makes it very hard for the parents to fight against them and with the parents being traumatised as it is from what has happened to their child this makes them very vulnerable and easy  pickings.


Shown in the video MCH own Therapists admit no child in Medway gets more then 16 contacts a year, despite clinical need of the child, such as my daughter.


 









Monday, 17 December 2012

Alyssa Loates


My daughter Alyssa Loates who was 8 at the time got the Norovirus in march 2012, at first she had all the normal effects but then she started to go floppy and started to have confused speech, she ended up in Medway hospital and got worse, Doctors tried to suggest it was her Autism, but I argued as her Autism is high functioning and she acted nothing like this healthy, then she started fitting becoming critical, the doctor caring for her that day said he had a dream about Alyssa which lead him to come in two hours early on his shift, Alyssa had seen doctors all her life and this condition was missed, it's a metabolic condition called  OTC defiency, but this dream allowed this doctor to find Alyssa's condition and treat it before it killed her,those two hours meant everything! still this Apparent Miracle wasn't enough as the ammonia caused by the OTC is deadly and had already caused Alyssa's brain to swell so badly that it was crushing the primal part that controls her heart and lungs.



Alyssa was rushed to London where the doctors done an MRI, with the results from that the doctors concluded that she had only 72 hours to live , we was told there was nothing they could do and to call a priest and family, Alyssa's heart was stopping because of her brain, Alyssa was past critical and death was the only medical certainty but then another  Miracle...with being beyond the help of medical science and doctors she started to stabilize .. even so The next day Alyssa had another MRI and a test for her neurological activity, the doctors called all our family in the room and broke the bad news, they told me and Sarah that her brain was as damaged as it could get and that she wouldn't be able to survive without the life support and that we would have to make the decision to turn it of, they said she wouldn't come off the ventilator, move, talk, see, or hear and that if we kept her alive we would only be being cruel... we were completely devastated, it made no sense to get this far for her to die now, that day the song In The Arms Of an Angel by Sarah McLaughlin started to randomly play on my wife's phone, My wife was certain it was Gods way of saying Have faith she's in my arms..  Alyssa was in PICU on life support for 17 days and in a coma for over a month.


The day come for them to take her of the life support, Joshua who is Alyssa's twin Brother had to say goodbye to his sister that day as the worse was expected, they took her off and again against all medical science she breathed by her self even though it was neurologically impossible for her to do so.  Since that day the doctors stopped telling us what Alyssa would do and instead come to see, as the only thing medically they could tell us is that she shouldn't even be alive,one of the top neurologists in the country now call's Alyssa her Miracle Girl.







At first she couldn't even move her eyeballs but has slowly been regaining some control she was sent to Tadworth the children’s trust for 3 months for rehab,with only 30 minutes a day of physio, not including weekends and bank holidays, we were very disappointed with which was supposed to be intensive rehab, but were grateful it gave us enough time to find a suitable home that could be adapted for Alyssa. Due to the high cost of Tadworth, the Primary Care Trust wouldn't fund her any longer there and she was sent home to regress, while still on trial for an unlicensed medication in the community, it was classed as an unsafe discharge,






I should note that the care side of Tadworth by Camelia House was excellent and we appreciated the dedication and compassion Camelia showed,  still she’s improving as me and my wife spend everyday and every minute exercising her, since we came home in September Alyssa is now able to stand with support, she has started saying words and sentences at times, and continues to improve even though we was told she would regress at home by Tadworth, Alyssa  has been given permission for home schooling as it was agreed due to the complications and effect it could have on her metabolic condition due to various reasons it was best not to put her health at risk,  my daughter is fully dependent at the moment and requires 24 hour care that me and my wife do for her.