Being a parent isn't easy. But being the parent of a chronically ill child is one of the most difficult, emotion wrecking, heart wrenching experiences imaginable. I've bore witness to several parent friends of mine lose their children to monstrous illnesses, including liver cancer and anorexia.
They have shared their grief and pain on social media, and one has even gone on to write a book about her experiences of being a mother to a teen with terminal cancer.
I can imagine it being so easy to be furious, to scream to the sky 'this isn't fair!' But the majority of parents who have ill children have been brave enough to accept the situation as it is, and work on making their child's time on earth as amazing as possible. You'll read about plenty of those kind of parents here.
If you're a parent who has healthy children, I'm sure I don't need to tell you how lucky you are. But I think that this article will reinforce it. If you are a parent who does have an ill child, I hope you can take some inspiration from these brave parents, and keep going because you're doing an amazing job.
15 Rare Childhood Cancer
6 year old Bradley Lowery suffers from the rare and debilitating disease neuroblastoma, and the Sunderland football team supporter has become known across the world for his winning smile and the friendship he has struck up with footballer Jermain Defoe.
Bradley has been fighting cancer for most of his life, and while he was able to beat the disease once, it returned, and the second time around it was terminal. His family who'd been desperately trying to raise money for treatment in the United Sates, were told that the treatment would only help to prolong his life for a short while - or it could even kill him.
Bradley's mom recently made an update on Facebook saying that Bradley is "very close to going with the angels now."
14 Stage 4 Liver Cancer At 13
Georgina Anderson was 14 when she was diagnosed with an extremely rare and aggressive form of cancer. The teen was a hugely talented singer and reached the hearts of thousands through her music, especially her song Two Third Of A Piece, which reached number 63 on the UK Singles Chart.
Georgina battled the disease with an astonishing amount of courage. On occasions she took to social media to share her thoughts on her battle and at one point tweeted: “OK I’ve stopped feeling sorry for myself now. Cancer I’m coming to get you!”
It was shortly before her 15th birthday that Georgina was told that they'd exhausted all treatment. She died just four months after being diagnosed with the disease. Her mom, Helen went onto publish a memoir about it entitled Piece By Piece, a transcript of the diary she kept during the last 4 months of Georgina's life.
13 Paralyzing Spinal Muscular Atrophy
When Victoria Strong and her husband were told their 5-month old daughter Gwendolyn was going to die from spinal muscular atrophy, they grieved everything she'd never have the opportunity to do. They grieved that they wouldn't be able to act on their most fundamental parenting instinct in protecting their daughter.
But thankfully, Gwendolyn defied the odds. She didn't become sickly as quickly as had been predicted. While her condition was still terminal, the family had more time together than they had originally anticipated. 7 years and 9 months after being born, Gwendolyn passed away.
"Knowledge of finite time can be a gift if you allow it, Victoria said after her daughter had died." Though fearful and unprepared, how could we spend that precious limited time falling apart? ...with a disease like SMA, with no treatment or cure, the only control we have is in how we react."
12 Two Year Old Son Is Terminal
When her son was 2 years old, Allyson Buck was told that he had an incurable, untreatable, terminal brain disease. Vanishing White Matter Disease, a form of Leukodystrophy.
Allyson asked herself: "If I could go back in time, what would I tell myself?" She said that she would have told herself: "For the next year you will hurt. Terribly. You’ll have never felt such pain before. You will be angry.
You will see some bratty child and think, 'Really? That kid gets to live and my child has to die? Really?' You’ll know it’s a horrible thought and you shouldn’t be thinking it, but you will. You will be afraid. Afraid of what this will do to you and your family. Afraid of what happens after your child’s death. You will never again be the person you were before. You will become a much better person."
11 Am I Going To Die Mummy?
Heather knew her 12 year old daughter Ellie's brain tumor was terminal. But when Ellie asked, "Am I going to die Mummy?" Heather made the decision not to tell her daughter the truth. "Some people die of cancer, but lots of people survive it," she said.
"Would it make any difference to you if someone was to say you only have 18 months or 18 years to live or you will live to be 100?" Her brave daughter smiled and said: "I just want to be happy."
Heather is convinced that hiding the truth helped prolong Ellie's life. The teen defied all expectations, surviving for nearly 3 years after being diagnosed. Doctors were amazed, and said that it was rare for anyone with the type of tumor to live for more than 6 months.
10 Heaven Instead Of Hospital
Four-year-old Julianna Snow was dying from an incurable neurodegenerative disease, when her parents, Michelle Moon and Steve Snow gave her a choice. They asked her if she'd want to go to the hospital the next time she became dangerously ill, or if she'd want to stay home, where she'd die.
They told her that if she died she would go to heaven. They told her that when she arrived there, she would be able to run and play and eat - all of the things the little girl wasn't able to do on earth. Little Julianna replied she'd rather go to heaven.
Controversy and outrage followed. But, despite the backlash, Michelle and Steve followed their daughter's wishes and Julianna died at home. Michelle said: "This last fight was not to be won by her body. It was tired, and it needed to rest. And when it did, she was comfortable."
9 Our Child Isn't Just A Statistic
In August 2008 Georgina Hillman was approaching her first birthday. She was a bright, happy, seemingly healthy baby. But when her mom Ruth was bathing her one night, she noticed Georgina's stomach felt oddly firm to the touch.
Concerned, Ruth quickly made an appointment with the doctor, but was dissatisfied when she was told nothing wrong. Her instincts told her something was terribly wrong. Shortly after, Georgina was rushed to the hospital, and a large mass was found in her stomach. The mass turned out to be a stage 3 Wilms' Tumour.
Georgina went through six weeks of chemotherapy - shrinking the tumor from the size of a football to the size of an orange - and a seven hour operation. Today Georgina is, miraculously healthy, happy and cheeky, with nothing to show for her ordeal than a few scars on her stomach.
8 Starving Herself To Death
Harriet Brown thought eating disorders happened to other people’s children. Not hers. She believed kids with anorexia 'chose' to have an eating disorder. Only when her 14 year old daughter Kitty developed anorexia did she realise the illness does the choosing.
The first time Harriet noticed something was wrong was when Kitty went for a check up at and weighed less than the year before. She then became aware of Kitty's abnormal eating habits and deteriorating moods.
One day Kitty said 'Mummy I'm dizzy,' and Harriet sped with her to hospital where she spent five days. Harriet has since taken on the role of helping her daughter recover, which includes bringing her home from college if she loses weight. Harriet said: "The rest of the world may think we’re being overprotective. We know the truth: we are saving our daughter’s life, if not literally, then in every way that counts."
7 Baby Was Born Without A Brain
Royce Young wrote a moving essay about his baby that was born without a brain and it went viral. The story explained the moment he and his wife discovered their daughter would be still born.
“We felt cheated,” he wrote. “What a total rip-off. The word I still have circling in my head is disappointment. That doesn’t really do it justice, because it’s profound disappointment. Like the kind that is going to haunt me forever.”
Eva was only 19 weeks when she was diagnosed with anencephaly. Her brain was missing the frontal lobe and the top part of her skull. Immediately her mother, Keri, asked her doctor whether carrying Eva to term would mean that her organs could be donated. They decided they'd continue with the pregnancy, so that although their lives would be devoid of a precious gift of a daughter, other hurting families could be blessed with life.
6 A Bucket List For Dying Baby
When Zailynn Mars was 3 months old, doctors discovered she had a rare and incurable form of spinal muscular atrophy (SMA). The disorder strips away her ability to control the muscles needed for walking and sitting, and would eventually impact her ability to breath and swallow.
When Zailynn's parents, Cory and Katie learned that, at best, their daughter would live for 2 years, they decided to throw themselves into life and enjoy every moment with their baby. The first step was to draft up a bucket list of everything they want her to experience while she's here.
So far she's met with Santa Claus, painted a picture, dressed up like a princess, seen animals at the zoo, and been walked down the aisle by her father. Other to-do's are once-in-a-lifetime, like getting on The Ellen DeGeneres Show to raise awareness about SMA, and visiting Disneyland.
5 Sensory Processing Disorder
Rachel Galinghorse found herself beyond exhaustion. Her son, who was at that age when he should have stopped having frequent tantrums was still having them. All the time. It was happening, more often than not, that she'd have to leave play dates, restaurants and stores.
She couldn't understand what it was she was doing wrong. She was already a mom to two older children. People would say to her 'boys will be boys' but she knew that something wasn't right. Then his babysitter said one day, "I think your son needs occupational therapy.' Her son was soon diagnosed with Sensory Processing Disorder (SPD).
Rachel quickly learned about the condition and now ensures that whenever he leaves the house, he has things with him in a rucksack - a small weight, noise cancelling headphones and fidget toys - that help him to keep his disorder under control.
4 Family's World Fell Apart
For 6 weeks, Kate and Andy Goodall were in a state of bliss with their new son Jacob. But then he started to become unwell and wasn't able to sleep through the night. It came to the attention of one doctor that one of Jacob's eyes wasn't closing properly and a series of tests, including an MRI were done.
The MRI showed a large tumor on Jacob's brain and he was diagnosed with terminal cancer. Kate said: "I was heartbroken and devastated when I found out. Our world just fell apart. Everything went from 0 to 100 in a nanosecond. I had never heard of a newborn with cancer, particularly a brain tumor."
They have made a vow to make the most of the time they have with Jacob. The couple even got married so that Kate would be able to share Jacob's surname.
3 Both Sons Lost To The Same Illness
Hattie Read was 11 months old when her brother Sidney passed away after suffering with Alpers' Disease, a progressive degenerative disease of the central nervous system which causes seizures and severely affects the brain and the liver.
He was 3. Then, when she was 4 Hattie watched her 2 year old brother Freddie die of the same condition. She would ask her mom Vicky why she couldn't go to heaven with Freddie. Vicky explained that 'heaven doesn't work that way.'
14 weeks after her second son Freddie was born, Vicky noticed a telltale twitch in one of his eyes, the same as she'd seen in Freddie's. She knew the family would experience heartbreak all over again. When his conditioned worsened, Vickie would tell Freddie that he could go to heaven when he wanted to. But she knew her lion cub would go when the time was right for him.
2 Aching Heart For Lost Baby
When her son was just 11 weeks old, Sheryl Blanksby had the news no mother wants to hear, that he baby had terminal cancer. Her dream life turned into a living nightmare.
She said: "The irony of life has hit my family so hard and everything doesn't make sense anymore. It feels like only yesterday when I posted about giving birth to our Rainbow Baby Thomas and here I am writing about his imminent death. His death. Can you even get your head wrapped around that concept? I can't."
Sheryl said she's unable to properly describe the pain she experiences when she looks his 'precious face.' When she goes to bed at night, she begs for it not to be he son's last."I am in desolation with no end on sight," she said. "My heart will forever ache for my Thomas and my soul will forever long for him."
1 My Princess Has Grown Wings
Jessica Whelan became known around the world after her Dad Andy published a distressing photograph of her in excruciating pain as she battled against cancer. The 4 year old was diagnosed with stage four neuroblastoma and died 15 months later. On the day she died, her Dad took to Facebook to break the news to everyone who had been following her story.
He wrote: "I feel both sadness and relief in informing you all that Jessica finally found peace at seven o’clock this morning. No longer does she suffer, no longer does she feel the pain of the physical constraints of her body. Now my princess has grown her angel wings and has gone up to play with her friends and loved ones. She will now watch down over her little brother and ourselves until one day we are reunited again."
Sources: Babble.com, DailyMail.co.uk, GlobalGenes.com, HuffingtonPost.com, Telegraph.co.uk, FoxNews.com