Give Beautiful Taio The Party He Deserves

Hi my name is Rose and I have set up this go fund me for my good friend elizabeth and her family,

Here is her story,

Hey everyone. I’m Liz. This is my precious beautiful boy Taio. He has been diagnosed with a rare genetic disease called Metachromatic leukodystrophy (MLD) they’ve given my poor baby boy approx 2 years left to live,as his mother I am completely distraught. I’m aiming to give my boy the biggest party ever to create all the best memories with him and my 6 other children before this disease takes over.

A backstory -

Taio is 2 years old. I’ve been fighting for my little boy since he was approximately 11 months old. With him being my 6th child my mothers instinct was just telling me somet aint right,I took him to the doctors numerous times on so many different occasions expressing that there’s just somet,he wasn’t hitting all the milestones he seemed to be crying in pain for the majority of the day. Anyway,doctors dismissed him and said and I quote ‘we don’t want to put him through a blood test at this age we will see him at 18 months old if he hasnt progressed’ I said please just take me serious I’m more than willing for him to have a blood test.. fast forward to the very day he turned 18 months I rang the doctors again and booked him in for another appointment. This time the doctor assessed him and finally referred him to the paediatricians at heartlands hospital. By this point he was regressing further falling whilst sitting collapsing whilst crawling no longer able to pull to stand or bare any weight on his legs causing numerous amounts of nose bleeds a day,again I don’t feel they took me completely serious to begin with but they agreed to assess him again in upcoming months. By the time the second appointment with the paed came around,there was more regression which prompted the hospital to then take me seriously. He was booked into mri scans blood tests were taken. All to begin with came back ‘normal’ then came more appointments more testing began more in depth genetic testing,nerve testing. With these results they found Taio is to have little to no nerves in his legs and his bloods confirmed he has this terrible disease MLD that will eventually take his life. To then be told that if they had caught it before the regression had started then he could’ve had gene therapy which would’ve saved me from losing my son.

My aim-

right now -

With the disease Taio has he will continue to deteriorate he will lose his sight he will lose his hearing he will eventually end up on feeding tubes he will come completely paralysed now I want to put my focus into throwing my Taio the biggest party possible

In months to come - I aim to take this matter to parliament where I will campaign for every newborn to be tested at birth,it’s just as simple as a blood test. This would save soooo many other people,children,families from going through this heartbreak. I will do everything I can to fight for all other parents and children. No one deserves this pain I feel.

Thank you for listening to our story. An even bigger thank you to everyone that can/has donated and shared.

It’s soooo appreciated

Love Liz and Taio xxx