Mila Warrior Princess

Just4Children are raising money for Mila’s therapies and equipment that will help her to learn to walk and communicate and help her to have a happier independent life.
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Mila Warrior Princess

Just4Children are raising money for Mila’s therapies and equipment that will help her to learn to walk and communicate and help her to have a happier independent life.

Mila is aged 3 from London. She was born prematurely at 34 weeks. In her first few months Mila would constantly cry and would always need to be held to settle. Her developmental markers were delayed which was put down to her premature birth and the fact she needed to be constantly held. Doctors had originally suggested this was down to colic or reflux but this was ruled out and eventually it was recommended that Mila saw a GI specialist. After booking a private appointment Mila was diagnosed with a wheat, dairy and soya allergy. A food elimination trial while breastfeeding was recommended which proved successful and Mila started becoming more settled. She stopped constantly crying and her development started to slowly progress.

She was not able to sit up, play with toys or do most things other babies could do but at 4 months she was finally able to crack her first smile. After this Mila was slowly building her skills and just before her first christmas at 10 months it looked like Mila was very close to sitting up when she developed infantile spasms. We originally had no idea what was happening and took Mila to A & E with the expectation that we would be told not to worry and sent on our way home but, Mila was admitted to hospital and the infantile spasms turned to tonic seizures.

The seizures led to a 3 month stay in hospital while the doctors tried to figure out what was causing them. While in hospital the seizures gradually got worse and she was having up to 100 seizures a day and at a stage was admitted to PICU. Eventually after many tests and scans Mila was diagnosed with the SCN2A genetic mutation for which there is no current cure. Mila continued to have lots of seizures but we as parents were taught how to deal with her seizures at home and Mila was discharged from hospital.

She continued to have seizures at home and she was to spend the next 6 months going to and from hospital via ambulance. Unfortunately, due to the seizures and multiple medications Mila lost a majority of all the things she had learned. Her smile was gone and the speech and language team recommended that Mila stopped breastfeeding so a NG tube was placed through her nose so she could be fed through a pump.

The next few months were a battle for Mila. She was transferred to the care of Great Ormond Street Hospital and was placed on to the ketogenic diet to try and get her seizures under control as Mila was diagnosed with a drug resistant epilepsy.

The seizures did decrease after going on to the Keto diet but they did continue and Mila was still being rushed to hospital by ambulance every few weeks. Her progression had also further declined due to the constant seizures and side effects of the drugs. She could no longer see clearly, she had involuntary movement and her tone had left her with little head control. During this time we were still looking for answers and would not accept a let’s wait and see what happens as a future for Mila.

After much research we were advised of a US specialist therapy for brain injured children called the Doman Method. Doman International then helped by creating a programme for Mila. Firstly, they recommended a nutrition plan that consists of foods and supplements that have helped increase her immune system, which has been a massive contributor to keeping her seizures away. She is tested regularly to evaluate her microbiome these tests have surprisingly pointed out issues in her gut which were adjusted which quickly led to some improvements in Mila’s overall progression. In order to help her with her new diet the NG tube was replaced with a PEG tube straight to her belly so we could feed her a natural blended diet.

Doman also gave us a program to follow daily which was the start of Mila’s battle to regain what she had lost and more. Every day she would be put through her paces by taking part in exercises to help improve her vision, hearing, body tone and more. The course is Mila led so we stop either when it becomes too late or when Mila shows signs of having enough but every day our warrior princess never gives up and is always willing to keep going. She is assessed every 6 months in Italy and a new programme is given to her to help her progress, with each programme there is normally a list equipment we need to get that is essential to her programme.

It has become a full time job for both Mum and Mila. Mum has given up her swimming business to be Mila’s fulltime carer and they both work tirelessly every day. Little by little things started to improve. Her seizures started to decrease and have eventually stopped. It has now been over 1 year since Mila had a seizure and is no longer on any drugs. Mila now enjoys eating softened foods orally so her peg is only needed for liquid. She is able to commando crawl and is currently working on sitting up. This is just the start to Mila’s story and every day she shows determination to achieve the goals we have set for her. In just one year she has made massive improvements.

There are lots of programs available which are proven to help children with a similar story to Mila. They can run alongside her main programme but are not supported by the NHS so tend to be very expensive and often on the other side of the country. With a combination of programmes and a good diet we are confident we can help Mila become independent young lady who can live a normal life.   

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