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 years old from London. She was born prematurely at 34 weeks. In her first few months Mila would constantly cry and was difficult to settle. Her development was delayed, which was at first put down to her prematurity. Doctors had originally suggested she had colic or reflux and after seeing a GI specialist, she was diagnosed with a wheat, dairy and soya allergy. A food elimination trial while breastfeeding was recommended, which proved helpful 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 old, 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 started on many different medications. Unfortunately, her condition continued to worsen and she also developed 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 (Paediatric Intensive Care Unit). 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 every week. 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 an 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 to 10 a day after going on to the Keto diet, but the frequent hospital admissions continued. 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 movements and her low 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 holistic programme for Mila. Firstly, they recommended a nutrition plan that consists of foods and supplements that have helped to improved her GI symptoms, strengthen her immune system and been a massive contributor to keeping her healthy and her seizures away. In order to help her with her new diet the NG tube was replaced with a PEG tube straight to her belly, which enabled us to feed her a natural blended food diet, instead of formula.
Doman also gave us a developmental 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, mobility and more. She is assessed every 6 months in Italy and a new programme is given to her to help her progress and with each programme there is normally a list of 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 had to put her career on hold to become 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 or been admitted to the hospital and she is no longer on any drugs. She is able to crawl, sit up unaided and eat by mouth. This is just the start of 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 holistic therapies that help children with a similar story to Mila. They also run alongside her main programme but all of these therapies are not available on the NHS, so tend to be very expensive and often on the other side of the country. With a combination of therapies and a good diet we are doing everything we can to help Mila to become an independent young lady and have a good life.
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