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A Voice for Max

Just4Children are raising money for Max to have life changing stem cell therapy to treat his Autism and give him a better quality of life.

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Just4Children are raising money for Max to have life changing stem cell therapy to treat his Autism and give him a better quality of life.

Max is aged 6 from Sutton in Ashfield in Nottinghamshire.

On May 12th 2017 our youngest son Max Joseph Brett was born. Max was born a beautiful little boy to add to our family.

In the first hours of Max’s life he failed his new born hearing screening test, we were assured that this was probably nothing to worry about and Max was booked in for a second new born hearing screening. At 10 days old he failed this test again. Despite this, mummy and daddy tried not to worry and just focussed on their perfect little boys. At 3 weeks old, after extensive testing Max was diagnosed with bilateral sensorineural hearing loss at a profound level. We were told that his hearing loss was so severe that a jet engine could fly directly above his head and he would not hear it. We later discovered that this hearing loss was caused by a genetic mutation called Connexin 26 (CX26, GJB2). These mutations are a common genetic cause for non-syndromic hearing loss and are responsible for 50% of non-syndromic hearing loss in children

After test upon test Max, at the age of 11 months was cleared to undergo Cochlear Implant Surgery at Queens Medical Centre in Nottinghamshire. The surgery was a great success and just after his first birthday, his cochlear implants were activated and he heard his parent’s voice for the first time. For several months, Max made excellent progress and was beginning to say single words; make excellent eye contact, wave, point and communicate, even appearing on the Lorraine show on ITV and in the Daily Mail, but then it all suddenly stopped.

At around 20 months old Max’s eye contact almost completely vanished, along with the words he had already developed and any sign of communication. He stopped eating his favourite foods, stopped engaging with other children and adults, showed no awareness of danger and didn’t seem to experience pain the way other children did. It was as if a mist had descended over Max and he seemed to disappear in front of our eyes.

At three years old, Max was diagnosed as Autistic. Max’s diagnosis is of autism spectrum disorder, sensorineural hearing loss as a result of Connexin 26, with bilateral cochlear implants, hypermobile and suspected ADHD. Max is extremely bright, writing words beyond his years and picking skills up very quickly, but he is non-verbal, he cannot talk, instead he makes repetitive noises such as screeching and screaming sounds. Max is also under paediatric care as he is incontinent and soils himself throughout the day. As a family we have had to change our life to fit around Max’s needs, our oldest son, Noah, also helps to support us and care for his little brother.

Prior to Max’s first stem cell therapy in Vienna, Max ran none stop, climbed, bounced and made repetitive noises. He struggled to fall asleep and frequently woke at 12 or 1 am and would stay awake all night and through to the next evening. Max ate a very limited diet and consequently suffered with severe constipation and still wore nappies all day and night. He really struggled to make eye contact and often removed his cochlear implants leaving him with no access to sound. Max showed no awareness of danger often running away from us and putting himself in immediate danger and showed no awareness of pain.

With your help and support we can provide Max with an opportunity to move forward with more stem cell therapy. We have already begun to see how this therapy has changed Max’s life for the better. Research on stem cell therapy is taking place all over the world and it has been proven to reduce the severe impact Autism has on people’s lives, in some cases, children have had such immense improvements that they are no longer medically considered to be autistic! Children have gone from non-verbal, to speaking, like their peers and so much more! Max has been fortunate enough to have already had three rounds of stem cell therapy, funded through family, friends and charity fundraising, but we are desperate to continue and to give Max the chance to learn to speak! This would change his whole world, his future prospects and give him the chance at a real ‘normal’ life.

Stem cell therapy, also known as regenerative medicine, promotes the repair response of diseased, dysfunctional or injured tissue using stem cells. Stem cells are the body’s raw materials – cells from which all other cells with specialised functions are generated. Stem cells are able to differentiate into whichever cell types are needed by the body, they effectively “Scan” body tissues and spot places, where infections are, or some other cells are degenerated and need fixing. They are able to locate lost (broken, impaired) neuron connections in the brain and restore them by making new ones. When these new neuron connections are built, the brain reaction speeds up. Stem cells cause the improvement of synaptic transmission and allow you to oxygenate the brain better.
When we introduce billions of these additional cells to the body, through stem cell therapy, we enable the body to repair itself naturally. Stem cell therapy for autism has been shown to, reduce the characteristics of autism, improve behaviour, anxiety, social skills, communication, speech and the ability to focus and as I have previously said, have the potential to repair the damage autism has caused on the body.

After Max’s initial treatment the first change that we saw, was that he began to sleep through the night. This was a monumental development for our whole family, after living on 3-4 hours sleep a night for nearly five years. Max almost immediately began to show more interest in his daddy, making eye contact with him and began showing more awareness of peoples lips moving, meaning speech and sound.

After Max’s second treatment Max began to show an awareness of pain. This may seem like a strange thing to be pleased about as a parent, but an awareness of pain enables us as human beings to learn from dangerous and painful situations, in order to not repeat the behaviour again. It is an essential skill that we learn as infants to help us stay safe. Prior to this treatment Max had no awareness of pain and therefore was at continuous risk of putting himself into dangerous situations. After this treatment Max also began to wear his cochlears more frequently and began to show more interest in sharing picture books, even repeating common words in a favourite book, pointing to items in a picture and generally wanting to join in.

After Max’s most recent treatment in April 2023 we have seen lots of changes! Max’s eye contact has improved dramatically and he often comes to family and those close to him to try and gain their eye contact, as a means of communication. Max will now take your hand to take you to where he needs something and is beginning to now use pictures to communicate his needs.

Max now can follow simple instructions, like going to the bathroom when asked to brush his teeth or choosing his shoes to go out, on occasion even putting them on independently. He is beginning to try and dress himself, even trying to put on his own nappy, shoes, socks, when mummy and daddy aren’t quick enough. Max will now run to greet me after school, with big smiles and kisses and shows a larger range of emotions. He is allowing me to put on his cochlears with greater ease and when he is with us, he is keeping his cochlears on all day, even falling asleep in them! He is happier, shows a larger range of emotions, laughing at appropriate times and is finally showing an interest in playing with his big brother. He now will give kisses to family, where he would not allow them to even touch him previously. The changes are small to a lot of neurotypical families, but to us they are huge. One of the most monumental changes we have seen is that on Max’s sixth birthday, he blew out his birthday candles for the first time in his life and then in the days following, blew bubbles! Max has never been able to do this and this is a huge change, as studies have proven that the skill of blowing is directly linked to the development of speech! He will also now walk beside me, reaching out for my hand without running away, he even walks with us as a family, without being held now! I could fill pages with the small changes that we have seen as well as the list of changes above.

With every treatment we have seen improvements in Max, calmer, happier, more social, more aware of his surrounding and dangers and a better understanding of speech. We have even heard a word or two reappear, mama, dada, no, stop, stuck, apple, star, duck, quack (he calls ducks dwack, dwacks).

We have been advised by one of the specialist doctors in this area, that has seen Max for treatment, that treatments one and two of stem cells, provide the body with the foundations and that treatments three and four are the most exciting, because they are when the cells can really start to make a difference and from what we have seen so far, we would have to agree!

Unfortunately, stem cell therapy is not currently offered by the NHS to treat Autism in the UK and this will not change in the coming years, which is why we have had to raise the money for the first three treatments ourselves. We are desperately looking for ways to secure further treatments for Max, to continue to change and improve his quality of life and give him the chance to speak that he so desperately deserves.

To get Max a treatment it currently costs us fifteen thousand pounds. That covers his treatment, flights and accommodation in the States. It is a huge amount to find and we have managed to do so three times, but we are struggling. We are reaching out to businesses in the hope that they can help us realise a dream and help us to fund Max’s next treatment. We appreciate any help toward this next treatment for our wonderful little boy.

Thank you for taking the time to read Max’s story, I’m sorry for the abundance of information, but we are so passionate about this treatment and how much it has helped our little boy already and desperate to raise the funds we will need to continue with this treatments