The Charlie Cookson Foundation

Magnificent Milo

Our 9th CCF Family

Milo Browne – Our 9th CCF Family

We can’t express enough how grateful we are to all of our supporters, donators, and volunteers who help us change the lives of these inspirational families. All parents worry 24/7 about their children, but they live with the comfort knowing that they can tell you when they feel unwell, or they have a pain or they can alert their Mammy or Daddy when they need help. The families we help have to watch their children 24/7, for fear that they may miss signs of them aspirating, choking, or stop breathing these parents have been hit financially owed to giving up their jobs to care around the clock for their child, where do they get the help to pay their bills? They have no jobs… their carers allowance stops when their child is admitted to hospital they have the same household bills but no wage. This is where we help!

Our September CCF Family live locally in North Shields, this amazing little boy Milo Tommy Browne is the son of Laura Davidson and Stephen Browne. This beautiful and brave 2 year old boy is showered with love and care from his Mammy and Daddy, his older brother Felix and step sister Mia. Please read about this inspirational family, they have been through and are still going through so much heartache.

When Laura was 12 weeks pregnant a routine antenatal screening showed an increase risk of her baby having problems, they were beyond worry and were sent for further tests and investigations. A detailed scan showed that their baby had two vessels in the umbilical cord, rather than three. There were other markers which suggested that their baby could possibly be born with Edwards Syndrome or Patau Syndrome, both of which meant the baby would die in the womb, be born with significant disabilities or die soon after birth. The heartache that these parents suffered prior to even meeting their baby is soul destroying. They were devastated….they were offered to have an amniocentesis to see if their baby had any chromosomal problems including Down’s Syndrome, but the test carried a risk of miscarriage, they had seen their baby move on a scan, heard their heart beat they did not want to risk losing their precious blessing.

They worried about the future, trying to remain positive throughout the pregnancy but their fear and anxiety remained deep within. Laura and Stephen decided to leave things to fate and wait until their baby is born then deal with what is thrown at them.

At 39 weeks Laura went into labor and Milo was born on the 3rd June weighing 6lb 3oz, their baby boy looked normal and once feeding was established they were sent home. 48 hours later Milo started to demonstrate jerky movements they were reassured by the midwife and advised just to monitor them. They continued periodically along with poor feeding, they were very nervous returned to their GP and then referred to the RVI, Newcastle upon Tyne. At 10 weeks old Milo had bloods taken for Chromosome testing which all came back negative, but the Doctors along with Laura and Stephen were concerned and further investigations were carried out.

They were so scared and frustrated and finding daily life extremely hard, trying to keep some kind of normality for the sake of Milo’s older brother Felix, and step sister Mia, whilst worrying so much about ‘what was wrong’ with their baby. Lots of conditions were being thrown at them as a ‘maybe’ they were petrified that they might lose their precious gift.

The hospital stays became more and more frequent, Stephen found it very stressful having to justify to his employer why he could not go to work, this lead to him having to leave his job as his family needed him more, Laura could not look after Milo in hospital and his 2 year old brother Felix at home, their lives were never going to be the same again.

In the early stages it was apparent that Milo had a floppy body and stiff limbs, with no head control. An MRI was carried out and showed no major abnormalities but they did not rule out a condition that maybe underlying. During the whole time of testing and investigations, feeding proved to be a major problem with Milo, he wouldn’t take his milk from a bottle and was unable to tolerate any feed, with the possible diagnosis of BKD (beta-ketothiolase deficiency) they were strongly advised to feed Milo every 3 hours around the clock via his Nasogastric Tube that had been inserted into his nose through to his stomach. If his blood sugar dropped, he could have a metabolic crisis which could lead to coma or death. Regular feed and glucose medicine ensured that he remained safe. Neither parents slept they were up through the night to ensure his feed was set up and he was safe from the tube moving and going into his lungs. This was the safest way to prevent a metabolic crisis. Laura and Stephen were exhausted, looking after Milo who was frequently in hospital, his 2 year old brother and stepsister Mia aged 6.

Trying to be normal for the other children was and is still so difficult, both children understand (Felix to a point) that their days have to be built around Milo, the affection they have for their brother is beautiful, they love him dearly.

After several months of feeding Milo through an NG Tube It was decided that Milo should have a Gastrostomy, a feeding tube to be placed directly into his stomach, this would require an operation under general anaesthetic, they did not want to put him through anymore procedures but they made the brave decision to have this operation.

When Milo was 16 months, the Doctors suspected that he may also have Mitochondrial problems as he displayed many of the characteristics, signs and symptoms. They were bombarded with scientific terminology and spent a lot of time searching on the internet for more information and answers…the Doctors ordered more tests and investigations, they were beyond drained.

By the time Milo was 18 months he had been admitted into hospital at least 12 times, spending a great deal of time away from home has had a huge effect on their financial situation, the added expense of travelling to and from hospital, food costs, whilst still keeping their home running for their other children. This on top of the heart ache of one parent leaving their eldest at home and vice versa, they both felt extremely torn.

Milo is very unpredictable fine one minute bad the next, his parents don’t leave him with anyone else as they feel the responsibility is too big, Milo cannot move sit or weight bare . He has no head control and can never be left alone as he is constantly sick before during and after feeds, the major worry is he does this quietly which could lead to aspiration if he is not moved quick enough to stop the vomit going back down the wrong way.

To date Milo has had numerous blood tests, 2 MRI Scans, EEG’s ECG’s, muscle biopsies, lumbar punctures, skin biopsies, an oesophagus biopsy , small intestine biopsy and many other operations and including fitting the Perctaneous Endopscopic Gastrostomy (PEG) which was then removed to fit a button. Many professionals are involved with his care, Physiotherapists, Speech and Language Therapists, Dieticians and many specialists Consultants, Doctors and Nurses. All this taken into consideration…so far all tests and investigations have come back negative, this inspirational and brave little boy is still undiagnosed. They know he has Gross Developmental Delay and Visual Delay, he cannot sit unaided and is unable to control his movements and suffers frequent jerky movements. He has a floppy trunk and goes from tense movements to relaxed within seconds. He will never be able to walk, crawl, or talk and is very vulnerable. The Doctors will continue to search for his diagnosis.

As parents the uncertainty and not knowing is devastating, all they can do is live each day as it comes, the jerky movements are becoming more frequent and Laura and Stephen along with the Professionals are seeing signs of his minimum skills fading as this mysterious condition starts to become more apparent. It is heart breaking for Laura and Stephen to watch, they know their boy inside out but are starting to notice things that he never did before….this condition is progressing, then they look at his smile and they do their very best to make his life as happy as possible.

Last year they moved house so they could be closer to Laura’s mam for support, but due to Milo’s needs they have had to move into a Council House that can be adapted with a lift and hoists so they can care for Milo without putting him at risk carrying him up and down the stairs. This has been such a hard and emotional thing for the whole family to take on as they have had to move Felix out of his school, and leave their support network. This has devastated them but they have to do what is best for their beautiful little boy who is extremely vulnerable. Laura and Stephen do everything they can to give Milo the best quality of life they can possibly give him, they try to take him to groups when he is well, this has proven to be very difficult lately as after a recent hospital admission back in July he is having more bad days than good.

Laura and Stephen are like passing ships, Stephen tries his best to make sure Felix and Mia don’t miss out but they both feel terribly guilty as they never get the full attention they need as their younger sibling has very complex needs.

They are worried about paying for their gas and electric over the winter months as the house they have moved into is bigger than what they are used to, we can take this worry away along with the worry of food bills and fuel costs for future hospital appointment/admissions.

We will relieve them of their financial strains for a period of three months. They have so many worries surrounding their youngest son Milo, we sadly cannot make these disappear but we can do our best to relieve their financial worries, if their bills are not paid, the whole family suffers.

Quote from Milo’s Mammy, Laura…
“We would like to say a massive thank you to CCF for helping our family. We are still settling into our new home and this support is going to make our day to day lives that much easier, Milo is due to be admitted soon for an operation and could be in for a while, CCF have taken a massive amount of pressure and worry off our shoulders so we can concentrate on Milo getting better and our other children. Thank you from the bottom of our hearts xxxxx”

Our clever little angel is bringing us these special children and their amazing parents, we are so proud of you little legs, keep flying high, you have another brave little boy with fab hair like you to look after from up there! We miss you more everyday blowing you butterfly kisses to catch xxx

Well done to everyone who has helped make this happen, walk tall today you are all amazing!

Love from all of the CCF Trustees; Sarah, Helen, Chris, Dan, Chris, Andrew and all the fantastic Volunteers xxx