Terminally ill mum’s memory mission
TRIP TO DISNEYLAND WITH SON, 7, TOPS LAUREN’S BUCKET LIST
A YOUNG mother has created a bucket list of memories to make with her seven-year-old son after being diagnosed with a terminal disease.
Lauren Rowley is battling Juvenile Huntington’s disease, which stops parts of her brain from working over time.
The 22-year-old, from the North Seaton area of Ashington, Northumberland, struggles with her speech and has rapid uncontrollable muscle movements.
Lauren, who is mam to seven-yearold Noah, is also fed through a peg due to issues with swallowing and weight loss. There is currently no cure for the disease.
Lauren’s condition has deteriorated rapidly, leaving her with limited time to make lasting memories with her son.
The Newcastle United fan has already planned her own funeral.
She celebrated her 30th birthday when she turned 22 as she fears she will not make the milestone.
She is also recording audio messages which she can play to Noah when she becomes non-verbal.
At the top of her list is taking Noah to Disneyland Paris, with her mam Claire Lang, 41, and her sister Sophie Bradley, 16.
She would also like to take Noah to a Newcastle United match at St James’ Park; stay in a lodge with a hot tub at Felmoor Park in Northumberland; visit Edinburgh Zoo, as she has never been to Scotland and do a skydive.
Lauren’s grandmother Maggie Lang, 62, who is also her carer, said: “She’s my extra heartbeat and I love her to bits. She wakes up with a smile and she falls to sleep with a smile. Huntington’s can be described as a form of dementia. It has the same kind of effect – her brain cells are dying.
“Lauren’s speech some days is non-existent. The movements have got really bad. When she was first diagnosed she had two or three tics a day. Now she moves so much she needs an intake of 5,000 calories a day to maintain her weight. If it wasn’t for Noah she wouldn’t be here. She wouldn’t put herself through what goes on with her if it wasn’t for Noah, he’s her saviour.
“It’s about making memories while she’s still able to.”
Lauren was diagnosed with Huntington’s disease at the age of 18.
Her grandmother Kath Rowley, her dad Mark Rowley and two of his siblings were also diagnosed with the inherited condition.
Lauren inherited the disease from her dad, who sadly died in March last year, aged 41.
Maggie said: “She didn’t even tell her dad she had it until a couple of days before he died.
“He was so sorry and that’s the reason she didn’t tell him at the time. But her speech and movements were getting so bad she had to tell him. He struggled with a lot of guilt. He loved her – Lauren and Noah were his life.”
Maggie said Noah will not be able to be tested, to find out if he has inherited the disease, until he turns 18.
She said: “Lauren fell pregnant very young which was a massive shock. When she told us that she was pregnant we had to tell her that she could have her dad’s disease.
“We were concerned that if she had it she would pass it onto her children. Lauren was determined that she was going to have Noah. She said it could be her only chance to be a mother if she did have it and it would be her dad’s only chance of being a grandad.
“Noah was born eight weeks early. From the beginning she was the most amazing mother. She wasn’t really showing bad signs then. The only symptom she had was walking into things, like a clumsy kid really.”
Maggie said that Lauren’s disease has now escalated to the point where she is no longer able to look after
Noah herself. He has now moved in with Claire and visits Lauren on a daily basis.
Maggie said: “The closest I have seen to Lauren breaking was when she actually admitted she could no longer parent Noah independently. That was only about six months ago.
“The love he’s got for his mam is enormous. He tries to fathom out what’s going on and how she’s coping. He’s like a little carer at times. He was excited because he was going to do his first peg feed with her.
“It’s heartbreaking because he’s seven. He climbs into bed with her and talks the life out of her. One of the things on Lauren’s bucket list is to get him to a match.”
Lauren, who has also battled back from sepsis twice as a teenager, is big sister to Katie, 19, and Sophie, who have a different dad. She decided to make a will and a funeral plan when she started needing to be peg fed.
Maggie said: “She’s picked her songs and her coffin and what she’s going to wear. She’s a massive Newcastle United fan. She wants people to wear Newcastle United shirts at her funeral and she wants the Blaydon Races played. As long as I draw breath, Lauren will be nursed at home. Lauren’s got two younger sisters, Katie and Sophie, and they’ve said exactly the same thing.”
Legacare, who have been organising her legal paperwork, set up a Just Giving page around a month ago in the hope of raising enough funds for Lauren to take Noah to Disneyland Paris. More than £6,200 has been donated to the fundraising page.
Maggie said: “We are overwhelmed. For the first five days me and Claire cried daily. Everybody has come together to support her.”
Lauren added: “Thank you to everyone for donating to me. We are all very appreciative.”