Parents' touching bucket list for toddler with rare disease and only two years to live

A family are ticking off items from a poignant bucket list of activities they are hoping their terminally ill toddler can experience before a rare genetic disorder claims his life.

Zach Parnaby, aged 20 months, appeared to have been born a healthy baby, but was diagnosed with the illness that had been unwittingly carried by his parents just after Christmas.

Now the medical condition known as Krabbe Luekodystrophy, a terminal disease which affects one in 100,000 people, will cause Zach to gradually lose the ability to walk, talk, see or hear. His doctors say he might not live beyond his fourth birthday.

His mother Lindsey Parnaby, 29, and 29-year-old father Ben, from Spennymoor, Co Durham, are raising awareness about the condition.

They have spoken of their 16-strong "wish list" of things their son should see and do before he passes away. A Go Fund Me page set up in Zach's name has already raised £4,000 in the hope he can complete his list.

Zach has already met his favourite cartoon character, Fireman Sam, taken a ride on Thomas the Tank Engine, gone on a boat trip, got his own pet dog and been introduced to stars of Newcastle United.

He is still yet to swim in the sea, although his parents are hoping to take him to see family in Spain when the weather is warm enough for him to take a dip in the ocean.

They also want Zach to ride a bike, meet a "real bear", meet Mickey Mouse and swim in a waterfall. Top of the wishlist is to find a cure for Krabbes disease and for children to be screened for Krabbes at birth.

"The things we are generally doing with Zach aren't out of the ordinary," said Mrs Parnaby. "They are things we would have done with him anyway whilst he was growing up, but we just have to squeeze it into such a short space of time whilst he is aware. We want him to enjoy it and be aware of what is happening.

"Sadly his symptoms have been very rapid. We don't know what the future looks like, but we have to take each day as it comes. Every little cold could be it, we just don't know. We know Zach is not going to see four, five or six. The doctors told us he may have between 18 months and four years."

^{Zach riding on Thomas (Cavendish)}

She added: "We are hoping to go to London soon so he can go on a red top bus and the London Eye. We are taking him to Richmond where a friend's events team are putting on a Disney party with the Frozen characters and Mickey Mouse. He loves Frozen.

"We want him to ride a bike. It's something every child should do, but the practicalities of all of the wishes are quite difficult. I don't know if we can find a bike seat that will work for him.

"He absolutely loves the film Up and he loves it when the balloons come through the roof. He would always shout 'ball'. We are never going to get a house lifted up by balloons, but I was thinking about something to do with a hot air balloon. Although I am not sure about the practicalities of it."

She said if Zach had been screened for the illness at birth with a pin-prick test, it might have led to him undergoing a bone marrow transplant that could have saved his life. Yet his family were told by doctors the procedure was too expensive.

Mrs Parnaby first noticed Zach had difficulty walking last November and went to see her local GP, who said it might be a "phase".

But as he began to deteriorate and could only crawl in early December, Mrs Parnaby took him to the Darlington Memorial Hospital, where she was seen four times before he underwent an MRI scan.

^{Zach showing off his skills as a swimmer (Cavendish)}

Zach was referred to Newcastle's Royal Victoria Infirmary and, on Christmas Eve, a consultant concluded Zach was seriously ill and prescribed morphine and diazepam. The formal diagnosis of Krabbes was made just three weeks later.

Mrs Parnaby added: "I don't know what was going through my head when the doctor told us on Christmas Eve. You just don't ever expect to be told this when your son has been happy and healthy for 17 months. If we had learnt of his disease from an earlier point it wouldn't have been easier, but it would not have been such a shock thinking everything was fine and normal for all that time.

"Up to that point he was a normal kid at play group three times a week. He was such a clever and active baby, going to water babies till he was 14-months-old. If we were given the option at birth to be screened and found out he had it, then we would have had the option of a bone marrow transplant which could have given him a normal life. It is too late now.

"We had 17-and-a-half months of thinking he was fine. It only takes a heel pin-prick test. I asked why they don't do it and they told me it was due to cost. Cost does not come into it with the lives of children."

^{Zach with Newcastle United captain Steven Taylor (A promise for Zach)}

To donate to Zach's cause, visit www.gofundme.com/apromiseforzach.

Zach Parnaby's wish list:

1. Find a cure for Krabbes disease
2. For Krabbes disease to be screened for at birth
3. Meet Mickey Mouse
4. Ride in a fire engine and meet Fireman Sam
5. Swim in the sea
6. Build a snowman
7. Go sledging
8. Meet a real bear
9. Meet Santa
10. Ride a bike
11. Meet a famous person
12. Ride on a red London bus
13. Take a boat trip
14. Have my own dog
15. See a waterfall and swim near it it's safe to
16. Take a ride on Thomas the Tank Engine