MISSION MILO

This is MILO

Milo was was born with a rare condition known as M3HBA (2-Methyl-3-Hydroxybutyric Acidemia) which has 10 cases ever recorded in the world. Most children with this condtion don't see past their 2nd Birthday. It is a degenerative condition and is life limiting.

Milo was also born blind (cerebral impairment) scoliosis (curvature of the spine) epilepsy, variable tone, no head control or any gross or fine motor skills (no control over any muscle) unable to talk or eat, sit or stand without being fully supported.

Despite the above as you can see,  our boy still has the strength to smile and fight on. Milo is the oldest known child with the condition that we are aware of and unlike others, Milo has been unable to hit any milestones and has the experts baffled and have time and time again said that eventually it could be named after him.

Milo requires 24 hour care and round the clock care and intervention.

Milo started his early life in hospital having tests and operations to try and find answers and help him see the next day. Milo needed a NG tube due to his failure to be able to take bottles. Then a PEG (tube fed into the stomach) sadly this was short lived and his stomach started to fail and required a JEJ (feeding tube that  bypasses the stomach and goes directly into the bowel) milo cannot talk, sign, eat or control his arms, hands which makes it difficult to communicate the only sense he has is his hearing and fixes on light and dark.

After our first Christmas in Great North Children's Hospital we decided to do something and donated hundreds of presents to the children who were too ill to go home for Christmas. Which lead to a yearly tradition with support from the general public, friends and family.

We raised money for a fully adapted sensory room where Milo spent most of his time.  This gave him a safe and educational space  aswell as giving him some sensations through the vibrations.

We are just 2 parents and have had dreams, and in 2015 we wanted to buy an adapted caravan for families to use fitted with profile bed, hoist, storage for equipment. 

A caravan which met the needs of families. But due to Milo's health being at its worst, it  became a pipe dream and massively out of our reach...........

We turned our efforts and focus to what we could do. But we always feel that we should have never gave up on it as Milo has never gave up.

To date, we have donated thousands of presents expanding from Great North Children's to Cramlington Hospital, CHUF, St Oswalds and more recently, 2021 cash for kids appeal.

We have Helped local families with providing specialist seating, sensory packs and donating towards an epilepsy monitor. Trying to make a small difference.

The last 2 years with the current situation,  we have only been able to raise funds via selling our hand made crafts made by myself (Milos dad) , Laura (Milo's Mam) and Felix aged 10 (Milo's brother) we are at Tynemouth Market every Sunday heres our page Market

We are in desperate need of your help.......

Milo's health recently has started to deteriorate and his respiratory issues have gotten worse,  his seizures have heightened also which have required emergency rescue meds. 

We know Milo will lose his battle which kills us inside as we feel helpless.

We know our time is short and no matter what we do there is no cure or anything to stop him from being taken away. But what we can do is inspire others and leave a legacy by creating forever memories for families and sharing Milo's strength and determination with the world

Whether it is a bike ride, sponsored walk, run, obstacle course, sky dive, cake sale, collection bucket in your work place, we need your help.

Everyone who meets him  say his smile lights up a room.

EVERYONE needs a Milo day!!!!!!!!

He gives us strength and we try to make him proud of us.

It has been a forever dream and we have done every dream so far. It may seem so out of reach,and for just us 2 parents, it is. But we are hoping we are not going to do this alone and we will not give up on him.

If you want to help with Mission Milo please get in touch and help us.

From Our Milo

Thank you