Campaign Story

Maroochydore, Queensland, Australia

Supporters

Arian was born on November 2007 to a Romanian Mother and Iranian Father.

He was a playful, intelligent boy who loved kicking the football with his dad & grandpa and collecting car brochures and pictures whenever he went out shopping with his mom or aunty.

The family lived in the small town of Ploiesti in Romania, one hour from the capital city of Bucharest. His dad worked in a paint factory and his mom looked after the family and home.

This lovely little family did not know that their lives were about to be turned upside down. In July of 2012, Arian was just 5 years old and he became very sick. He started having uncontrollable seizures. The local doctors were struggling to find the reason for his seizures. They ran many complicated tests and even took a spinal sample, unfortunately no one had an answer.

Arian’s parents were confused, scared and devastated and all they could do was to take him to a more advanced hospital in the capital city of Bucharest.

Although there was plenty of uncertainty amongst doctors not knowing what was happening to Arian, they diagnosed him with acute Encephalitis which is the inflammation of the brain. The family was told that the infection could have been caused by an insect sting or an allergic reaction to some unknown substance.

After about 3 weeks, Arian showed signs of improvement and was released from the hospital. This was a very traumatic experience for the whole family but they were assured by the doctors that there was nothing to be worried and this was just a one off natural reaction to an insect. Everyone was happy and ready to go home and trying to get back to normal life once again.

Arian went back to being a little boy. He was getting ready to start school when suddenly in June 2013 he got sick again. The seizures came back, his parents rushed him to hospital. Not knowing why this was happening and not having an advanced medical team or the technology, all that the doctors could do was to put him back on medications to control the seizures. After several days his attacks stopped and he was released from hospital with a big bag of medication that he needed to take from this point forward.

Arian had changed, he was no longer a happy, cuddly boy that everyone used to know. He became very shy and didn’t want to play, as if he was hiding himself from everyone.

In 2014, after one year of those medications, Arian started having the most horrible seizures, the worst he had ever experienced.

Once again he is admitted to the same hospital. This time the seizures were so violent that his little body could not handle and just after a couple of days in hospital, he goes into coma. At this stage he is transferred into intensive care and put under life support while his family is watching in horror!

He was in coma for almost a month, and this was a time that some of the doctors had lost hope and told the family to prepare for the worst. Everyone in the family was devastated and crushed by the sadness.

After one very long month of waiting for a sign of hope, Arian fought back and proved to everyone that he was not going to give up. Once again he opened his big brown eyes!

Unfortunately, Arian had lost the use of his legs, hands, neck and face muscles. This meant that even the simple tasks of clearing his chest, coughing, chewing and swallowing were now a nightmare and he had to be connected to machines, and tubes had to be used for feeding him.

Arian and his parents were now dealing with the day-to-day challenges that come with this condition. It was a shattering time for this small family but they were going to do anything to help Arian survive.

While the family was trying to cope with the situation, Arian’s aunty & uncle who live in Australia (who have started this campaign to help raise money for Arian) were searching for help from doctors around the world. They came across Professor Majid Samii in Hanover, Germany who is a world renowned neurosurgeons. Dr Samii advised that the most accurate way to diagnose Arian’s disorder is through a genetic test.

Finally, after an expensive and slow process of having a genetic test, doctors diagnosed Arian’s condition to be Mitochondrial encephalomyopathy (MELAS).

MELAS is a condition that affects the brain, nervous system and muscles. Early symptoms may include muscle weakness and pain, headaches, loss of appetite, vomiting, and seizures. Most affected individuals experience stroke-like episodes. These episodes often involve temporary muscle weakness, vision abnormalities, seizures, and severe headaches resembling migraines. Repeated stroke-like episodes can progressively damage the brain, leading to vision loss, problems with movement, and a loss of intellectual function (dementia).

Most people with MELAS have a build-up of lactic acid in their bodies. Increased acidity in the blood can lead to vomiting, abdominal pain, extreme tiredness (fatigue), muscle weakness, and difficulty breathing. Less commonly, people with MELAS may experience involuntary muscle spasms (myoclonus), impaired muscle coordination (ataxia), hearing loss, heart and kidney problems, diabetes and hormonal imbalances.

Unfortunately for Arian his doctors had not recognized the symptoms early enough to prevent him from going to coma and the damage this had caused to his brain.

Arian’s parents became his full-time carers; his dad unable to work for several months and at this point the family’s finances were under massive pressure, they had spent their last cents!

At this point they had to do something different to help improve Arian’s quality of life but travelling was very risky, especially air travel. After weeks of preparations and getting permissions from airlines, Arian was transferred to Tehran, Iran. Here Arian’s grandma who is a pensioner provided them with some financial support and Arian was taken to a specialist hospital.

Arian was scheduled to visit specialists, physiotherapist, speech therapist and a dietitian to help him regain some of his lost strength. He started showing signs of improvement and everyone was happy to have some hope back in their lives.

The doctors in Tehran introduced us to the possibilities of a new medical revolution, which is called Stem cell therapy.

All around the world it appeared that people were getting amazing results for treating different disorders using stem cells. Arian’s family thought if this was the last hope available; they had to give it a shot, however there was a major problem, MONEY.

After spending 9 months in Iran, the family pulled together funds, by selling anything and everything they could and also with some borrowings. They managed to get Arian admitted to a hospital in Thailand. This was the cheapest Stem cell therapy they could find and they had gambled everything for this treatment. Although steam cell therapy is not a cure, there have been many cases where patients have had amazing improvements and that’s all the family was hoping for.

In 2015 Arian was put through 3 weeks of treatment in Thailand. This included several stem cell injections, special diet, some other medicines in support of the treatment, hydrotherapy, oxygen chamber, massages and specific exercises designed to improve muscle movement. By the end of the treatment, we saw major signs of improvement and most importantly we saw Arian with a smile on his face. This was a happy moment since for the past few years he was in constant pain, in and out of different hospitals undergoing medical test and having to take loads of medication. No one had seen his smile for a long time.

After nearly 18 months of trying everything available Arian is able to stand up and hold his balance for almost a minute or two without any help. He can slowly walk and he is showing other signs of improvement. He is even kicking his favourite football. Miraculously he has gained a little weight which is a great deal for us. We have seen this little boy fight for his life and he has proven that he is not going to give up.

We are now trying to raise $35000 to send him for a second round of Stem cell therapy as this will give him a great boost and a fighting chance towards his recovery. We are asking for your generous donations to help this little fighter in his battle.

Also we are more than happy to share copies of hospital bills, medical reports, travel expenses receipts and any other documents you wish to view or inspect.

Note: Stem-cell therapy is the use of stem cells to treat or prevent a disease or condition. Bone marrow transplant is the most widely used stem-cell therapy, but some therapies derived from umbilical cord blood are also in use.

Stem cells have tremendous promise to help us understand and treat a range of diseases, injuries and other health-related conditions. Their potential is evident in the use of blood stem cells to treat diseases of the blood, a therapy that has saved the lives of thousands of children with leukaemia; and can be seen in the use of stem cells for tissue grafts to treat diseases or injury to the bone, skin and surface of the eye. Important clinical trials involving stem cells are underway for many other conditions and researchers continue to explore new avenues using stem cells in medicine.

Olivia Simmons

8 years ago

$50

Anonymous

9 years ago

$50

MITRA JOZENAZEMI

9 years ago

– Offline donation

$10

Akbar MEHDIZADGA

9 years ago

– Offline donation

$50

Tracy Stokes

9 years ago

– Offline donation

$20

Iranian Senior Women’s Association & Families

9 years ago

– Offline donation

$1900

Foroozan Shirazi

9 years ago

$100

Anonymous

9 years ago

$500

Soodeh Memari

9 years ago

$7

Anonymous

9 years ago

$90

Iranian Senior Women’s Association

9 years ago

– Offline donation

$250

Michael Burgis

9 years ago

– Offline donation

$20

M B

9 years ago

$100

Mehrnoosh Khodaverdy

9 years ago

$50

Nima Noraei Danesh

9 years ago

$25

Maryam Mahzoon

9 years ago

$100

Helia Faraji

9 years ago

$100

Anonymous

9 years ago

$9

Sudabeh Norouzi Nia

9 years ago

$25

Anonymous

9 years ago

$25

Helia

With good wishes and prayer that you get well soon

9 years ago

Nasim Razi

Azizam ye arezoo be arezoohaye man emrooz ezafe shod va on salamatie to hast Ghavi bash ❤️❤️❤️

9 years ago

Newsha Javahery

I hope he gets well soon. 🙂

9 years ago

Maryam Mozooni

Keep it up little man! God Bless you.

9 years ago

Sherry Abbassi

Wish Arian a speedy recovery! Sending him love and prayers! X

9 years ago

roya akrawi

Omidvaram halesh har chi zoodtar khob beshe ❤❤❤

9 years ago

Alex Zar

People are amazingly generous and we are deeply touched by all of your financial support. we are getting donations from all around the world and we have managed to collect $1350 so far which has made Arian’s family so happy and grateful. Can you please help us by sharing the campaign once again with your friends and family to help Arian get more support? Thanks you in advance, Alex

9 years ago

Amireh Amirmazaheri

Get well soon little boy cx

9 years ago

Farzaneh Kordbacheh

I hope he gets his complete health back very soon!!

9 years ago

Mahtab Lahijany and Abbas Talanehzar

Matty Zar

Raj Singh

Susan Adams