Joe's Story Reaches out to Pakistan
Latest Update...18th January 2010
After several operations in August, the family decided to stay on in the UK for
the month of Ramadan, in order to start fund raising for the next stage of
Patricia Roberts from Yorkshire who co-ordinated the UK help said
“The prognosis was not as optimistic as we had hoped. Unfortunately, Ali’s eyes
are too dry to enable stem cell treatment to be carried out; therefore the
family have returned home for a while, to think about the next stage of
It may be possible for Ali to be fitted with artificial corneae in
the future, but at the moment, he is too young for it to have any chance of
success, and the surgeons have advised against any further intervention at this
This operation would probably be carried out in Boston where pioneering
work is being done on patients not suitable for stem cell treatment, but the
operation is also carried out at the Centre for Sight in East Grinstead where
Ali had his treatment.
He had several operations to open his eyes after they had
been stitched shut, this had lead to his eye lashes growing inwards causing an
amazing amount pain on a daily basis.
To ensure that the benefits of the surgery
are maintained, it is vital that Ali has an adequate supply of eye drops and
ointment to use everyday. This is most important, as the eye must be kept as
moist as possible if future surgery is to succeed. The family have made many
friends within the local Muslim community in Crawley who will continue to raise
the huge amount of money which will be needed in future years.
Latest Update...21st October 2009
Following Ali’s surgery in August, the family decided to stay on in the UK for
the month of Ramadan, in order to start fund raising for the next stage of
The prognosis was not as optimistic as we had hoped. Unfortunately, Ali’s eyes
are too dry to enable stem cell treatment to be carried out; therefore it is
probable that the family will return home for a while, to think about the next
stage of treatment.
On the 21st of September, Ali had surgery to stitch both eyes shut, in an effort
to preserve what little moisture there is left in the eyes. It may be possible
for Ali to be fitted with artificial corneae in the future, but at the moment,
he is too young for it to have any chance of success, and the surgeons have
advised against any further intervention at this stage.
This operation would probably be carried out in Boston where pioneering work is
being done on patients not suitable for stem cell treatment, but the operation
is also carried out at the Centre for Sight in East Grinstead where Ali is at
Latest Update...8th July 2009
Newquay Lions assisted local family with their mission for a young Pakistani boy
The original date for his visit had to be cancelled days before the family where due to set off after an unexpected delay in the Visa being sent to the family.
Thankfully all aspects of the trip have been rearranged as it was feared that
after getting so close to Ali coming to the UK the whole trip would not happen
Matt said “We where still short of funds for day to day transport and evening
meals so we approached Newquay Lions who have helped Joe when he was alive and
have been a huge support with the website after he died”
Adrian Clive the international officer said “We where happy to help as this has
a strong link with a local family and the story of how they have got this far
was amazing, we simple could not see them struggle at the last hurdle”
The family arrived in the UK on July 5th and are staying until July 24th the
examination under anaesthetic will be carried out on the 8th July. After that,
we shall know what other procedures are needed to restore Ali's sight.
This allows them time to be available for interviews and plan for future
procedures , once a full surgical plan with costs and anticipated time frame has
been established with Dr Daya.
Latest Update...17th June 2009
Ali is a little boy from Karachi, Pakistan, who is in
excruciating pain, and who is close to having life
saving treatment in the UK.isation, and the air tickets for the
entire family have been donated by First Hand
The accommodation at Ramada Hotel Gatwick has been
paid for by and the management at the hotel have
been very co-operative with regards to future press
The family will be in the UK from July 5th until
July 24th 2009.
This allows them time to be available for interviews
and plan for future procedures, once a full surgical
plan with costs and anticipated time frame has been
established with Dr Daya.
Patricia Roberts and Linda Harcourt Smith will be
travelling to the hospital to meet Ali and his
family, and discuss what further help will be
needed. Patricia will be selling greetings cards to
raise funds in a few weeks time.
If you can help with fund raising, publicity, or a
donation please contact either Patricia or Matt.
A PAKISTANI boy in excruciating pain is close to having life saving
treatment for his rare condition, partly funded by the parents of
Newquay miracle boy Joe Way.
Four-year-old Ali Ghazi suffers from Stevens-Johnson Syndrome (SJS), a
debilitating adverse drug reaction which has attacked Ali's skin and
eyes, stopping him holding his head up because of the intense pain
from light sensitivity.
Joe Way contracted the syndrome which left him life limited and Joe
died on May 7th last year and his parents Matt and Claire are now
helping in Ali's fight for survival after being contacted by Helen
Milne President and Founder Milne Stevens-Johnson Syndrome Society in
Helen, whose child has also suffered from SJS was contacted by the
parents of four year old Ali Ghazi from Karachi in Pakistan. Ali
literally lives in agony every day with severe ocular surface disease
as a result of the SJS reaction to medication and Helen contacted
Joe's website to ask for UK assistance for Ali.
for the factsheet on Stevens-Johnson Syndrome
Mr Sheraz M Daya MD FACP FACS FRCS(Ed) Director and Consultant
Ophthalmic surgeon from Corneoplastic Unit and Centre for Sight, and
his colleague Mr. Raman Malhotra FRCOphth have offered their services
for free to help Ali.
Mr Daya said "The first step in Ali's case is to perform an
examination under anaesthetic (EUA) to understand the extent of his
condition and decide what can be achieved in terms of intervention.
The cost of £5000 will cover the medical facility costs, travel and
accommodation". There will be no charges by either surgeon.
They find out this week that the visa has been granted for Ali and
his family to travel to one of the best places in the world for
treatment in Sussex, where two doctors have agreed to treat Ali for
Ali's father Shahzad works in his family's gift shop in Karachi
earning the equivalent of £99 a month.
The family have saved every penny to help Ali but are unable to cover
the costs of the life saving treatment he needs.
Shahzad said: "To watch your child experience the pain that Ali
endured never leaves your mind, regardless of race, religion or
"Then to watch them suffer every day without any hope is a hell that
no one should know.
"As a whole the family is humbled, grateful, overwhelmed, terrified
and hopeful all at the same time about having to reach out for help.
"Every parent wants to be able to help their child and the feeling of
helplessness is indescribable."
Linda Harcourt-Smith has also been helping after The Ways contacted
her. Linda from the South East of England has had over 15 years
experience with SJS with her son Ian who is doing very well now but
has been through some hard times.
Linda has been contacting various organisations and is the first
point of contact when the family arrive in the UK with support from a
local mosque in Crawley.
Patricia Roberts, an adult who contracted SJS 15 months ago, saw the
appeal from Ali’s father on the SJS website. She contacted her Member
of Parliament, Greg Mulholland and has received support and help from
Greg in making contact with the Home Office and the UK High
commission in Karachi. Patricia says “It is a painful disease to have
as an adult, but as a four year old child, it must be terrifying.
Patricia is the press contact for the Midlands and North of England.
To donate please make cheques payable to the “Centre for Sight Trust”
and write “Ali Ghazi fund” on the back of the cheque these can be
Centre for Sight
Corneoplastic Unit & Eye Bank
Queen Victoria Hospital
East Grinstead W. Sussex RH19 3DZ
What these three parents who are spread across the UK and the
Atlantic hope for Ali and his family is someone will come forward to
help provide the finances to take up the help offered by our own UK
Matt added "Ali's pain is minute by minute and hour by hour. There
is someone out there that has the means to relieve not just the pain
Ali is suffering but that of his parents from the devastating effects
of this reaction"
Non Southwest media contact
Telephone 0113 2676469
South west of England Media
Matt Way – 07761079454
Direct contact with family whilst in the UK
Canadian and USA fundraiser
Helen Milne Founder and President Milne Stevens Johnson
Sheraz M Daya MD FACP FACS FRCS(Ed)