Malachi_Tyler

.co.uk

Malachi is a 9 year old boy from Tunbridge Wells who has a genetic condition called neurofibromatosis which is a condition which manifests differently in each individual, he was diagnosed at birth as his father & 2 of his brothers also have the condition.

His dad has lived a life with hardly any symptoms accept he developed Cancer of the Thyroid in 2008.

Malachi's brother Zechariah (15) has mobility problems and is in a lot of pain if he walks so uses a wheelchair when needed.

Samuel (14) has Aspergers which is connected with this condition.

All 3 children have hypo mobility and lax ligaments.

 

By 14 months old Malachi was not crawling or developing properly so I contacted the neurologist which our others were under, they agreed to examine him, after the examination they felt sure it was just delayed development but they was willing to do an MRI Scan to be on the safe side but we was assured it would come back clear.

 

2 weeks later we had the phone call we had been dreading and one we never thought we would ever get! The hospital told us he had a large Bilateral extensive Optic Nerve/Chasm Glioma (brain tumour) and he needed to go on urgent Chemotherapy to save his sight.

They was hopeful of saving Malachi's sight but sadly 6 months into treatment which brings it's own complications such as blood transfusions, low neutrophil's and a lot of in patient stays as he was very poorly, and hair loss, he lost his sight in both eyes.

 

By Christmas 2010 just a month before his 2 birthday he went completely blind he also lost all light perception. We continued the treatment in hope of now shrinking the tumour as the sight was no longer an issue.

 

Malachi's tumour did not shrink either, by the end of his 18month weekly treatment the chemo had stopped it from growing any bigger so it was now stable.

We continued 3 monthly MRI scans under general anethetic we was told that he would always be under oncology and remain having regular scans in case of re growth.

 

In 2013 Malachi developed Hydrocephalus where he had to be rushed in for emergency surgery where they performed a drain and had a Ventriculoperitoneal shunt fitted.

In 2013/2015 Malachi had to have 12 further brain surgeries due to shunt failure which is scary in its self.

 

We went to the Royal Marsden for his regular scan last year and with total shock we were told his scan was again growing.

We have got to have another MRI scan in September to see at what rate or if it has continued to grow in the 2 months they have waited.

Sadly October 2014 we found out the Tumour is still growing and treatment will need to be started, we have another scan on the 24th of November to decide what chemotherapy will be started.

 

The Tumour is still growing, Malachi will have to have more treatment, either Chemotherapy or radiotherapy what ever is decided between us and his specialists after the scan. I have read up on Proton Beam therapy and I will be putting this forward to see if it is something which would be accessible for Malachi, but with the latest reports on the high profile case we are not sure how this will be taken, but we have a close relationship with Malachi's oncologist,brain surgeon and neurologist so I would hope the best treatment for Malachi would be offered.

 

Malachi is a bubbly (and extremely lively!) little boy who is achieving in life despite the tremendous difficulties he faces every day. We want to support him in getting the equipment and sensory toys that will ensure he has the same opportunities to succeed as anyone else as he grows up and starts mainstream school.

Also to fulfil his Bucket list with the latest developments this year 2014.

 

In the beginning of 2015 Malachi had yet another Shunt revision and developed Epilepsy and had prolonged seizures causing him to have to be put on medication to control them.

 

Originally malachi's Journey was set up by Miss Shelley Sellings to let friends & family be updated on Malachi's chemotherapy journey. Many people were calling her daily to find out if Malachi and his family were doing ok!

This page started to grow very rapidly as more people wanted to find out how he was after many gruelling months of chemo, blood transfusions, platelet transfusions, operations and numerous intravenous antibiotics as his immune system came crashing down!

 

Malachi's treatment was to shrink the inoperable tumour and save his sight, sadly this did not do either but thankfully it has halted the growth and given us time to concentrate on his development, which then led us to start thinking of schools and his having a future.

 

It quickly became obvious that specialist equipment for the blind was very expensive and beyond our means.

We needed a brailler so Shelley again took lead and contacted the local paper, they did a story on Malachi and told it's readers that he was in need of a mountbatton brailler costing £2500, in hope that some people may donate towards it.

Within hours of the Courier going to press they had been given an anonymous donation for the full amount and then another very kind individual donated another £2500 to buy the school a brailler as well. Also more, smaller amounts came in and we felt it right to set up his fund!

 

We contacted all the correct charity commissions but was advised as it was to benefit Malachi it needed to be a "fund"

 

Within a few days we had great ideas of how we could raise money for sensory equipment for home and school which we so desperately need for now and as Malachi grows and changes.

So we opened a business account called Malachi's Journey fund and started to dream dreams we never thought possible.

(Please note all account books are available for anyone to view if you are a donor or just wanting to see what has been possible to achieve with the help of Malachi's supporters.)

 

We have been able to not only purchase 2 braillers, but have donated a large some of money to equip the sensory room which will of course benefit others as well as Malachi.

 

We hope that the items purchased or to be purchased as we travel this journey with Malachi will not only benefit him but will benefit other children within the school needing sensory equipment, also our hope is as Malachi grows out of things with age that we have brought from the fund will be past on (donated) to other children who are in the same situation as he is in now.

 

We are now wanting to raise money for his bucket list.

 

We can't buy his health or his sight back but we hope this fund that has been set up will go somewhere towards giving him the future he so definitely deserves.

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This information was taken directly from Malachi's Facebook page*