A very special person will be flicking the switch to turn on the 2022 Enlighten festival on Friday evening.

Two-year-old Casey girl Addison Worsnop-Cottle was selected by Ronald McDonald House to do the honours at a ceremony outside the National Library, starting at 7.30pm.

The little girl, who loves The Wiggles and Christmas movies, has been braver than brave, fighting short bowel syndrome since she was born.

Addison - Addie - spent the first 10 months of her life in the Canberra Hospital. At the time, her mum Natalie Worsnop was living in Tumut and dad Damien Cottle was working in Sydney. So Ronald McDonald House in Canberra became their home away from home so they could be close to their little girl.

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7news.com.au, 2/16/22

Living with gastroparesis by Australian nurse who’s stomach was ‘paralysed’ after car crash
A year after a horror car smash left her badly injured, Stephanie Kelly, from Sydney, started suffering from strange symptoms.

Stephanie Kelly needs to be hooked up to a feeding tube up to 18 hours a day.

The 26-year-old, from Sydney, was forced to “medically retire” from her nursing career after she suffered severe injuries - including a twisted ribcage, slipped discs in her neck and chronic pain - following a horrific car accident in March 2018.

Just a year after the crash, she began experiencing nausea, rapid weight loss, excruciating stomach pains and vomiting up food she’d eaten the previous day.

Following multiple tests, she was diagnosed with gastroparesis, a condition where her stomach can’t digest food.

Her digestive system is now “paralysed” so she constantly feels sick and pain every day - and her illness can “flare up at random times”.

Speaking to 7Life in an exclusive interview, the 26-year-old says she has been living with TPN, otherwise known as total parenteral nutrition, a method of getting nutrition into the body through the veins.

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www.wusa9.com

VIENNA, Va. — A Virginia mother whose son relies on a recalled baby formula to eat through a feeding tube said the outreach of support she’s found through social media has restored her faith in humanity.

On Thursday, the FDA announced a major recall of three infant formulas manufactured at Abbott Nutrition in Sturgis, Mich. — Similac, Alimentum and EleCare. DC Health issued a statement Saturday warning parents not to use the recalled formulas due to possible bacterial contamination.

This recall has left parents around the country, including in the DMV area, scrambling to find a replacement. One such mother is Claire Rowan of Virginia.

Rowan found herself unsure about how to feed her 16-year-old whose medical condition means the use of this formula is essential. Her son generally eats EleCare Jr, a hypoallergenic formula that provides nutrition to children with protein allergies.

“He has both Crohn's disease, and something called eosinophilic, esophagitis and gastroenteritis, and so he just basically has food allergies to almost everything,” Rowan said of her son Will in an interview with WUSA9. “He doesn't eat anything by mouth, except he gets to try one food every eight weeks, to see if his body can tolerate it."

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 18-year-old says living with a feeding tube is challenging but uses her experience to raise awareness for others suffering from rare condition

Crystal Hooi
pride.kindness.sg, 2/10/22

The attractive teenager in the TikTok videos smiles, lip-syncs and moves to the beat of popular TikTok songs. Her vivacious personality shines through, her glow captures your attention.

Next to her sweet smile, a thin tube runs from her nostril, attached neatly to her cheek, partially camouflaged by her long locks. She seems oblivious to it.

Yet, Tammie Ong’s life, as it stands now, depends on this tube.

It is attached to her small intestine and delivers liquid meals continuously throughout the day to sustain her. Each bottle costs about $3 and she requires eight to nine of them each day.

“When I’m my parents’ most expensive child…” the 18-year-old, who has two older siblings, posts in jest on another TikTok video.

Watch closer however, and one notices she is in a hospital ward.

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ehlersdanlosnews.com, 2/7/22

Extensive rehabilitation therapy given by a multidisciplinary team allowed a teenager with digestive problems due to hypermobile Ehlers-Danlos syndrome (hEDS) to forgo surgical feeding tube placement and still gain weight, a case study reports.

“We believe that the combination of patient motivation, multidisciplinary intervention, and medication optimization led to successful feeding in this patient,” its investigators wrote.

The study, “EDS-related Feeding Difficulties: Preventing the Placement of a Surgical Feeding Tube,” was published in the Journal of Pediatric Gastroenterology and Nutrition.

Gastrointestinal (GI) and digestive issues are common for people with hEDS. Symptom management is often difficult and patients can rapidly move to needing dietary supplements and feeding tubes.

Hyperadrenergic postural orthostatic tachycardia syndrome (POTS) — an abnormal increase in heart rate after sitting up or standing — is also common for hEDS patients. Those with POTS typically require adequate hydration and salt supplements, as well as physical therapy.

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Jemma Nisbet's little boy Aaron was diagnosed with Temple-Baraitser syndrome at 15 months and he is currently the only person in Scotland with the condition.

By SianTraynor and Ryan Carroll

www.dailyrecord.co.uk, 2/5/22

A Scots mum has been left 'overwhelmed' by a woman's amazing reaction to her disabled son who has a rare developmental condition.

Jemma Nisbet's little boy Aaron was diagnosed with Temple-Baraitser syndrome at 15 months.

The five-year-old is currently the only person in Scotland with the condition and just one of 16 around the world currently recognised as having it.

After a visit to Edinburgh Zoo for her daughter's 10th birthday, Jemma was delighted when a mum didn't shy away from her son's questions while she was feeding Aaron.

The youngster - who is currently non-verbal - is fed via a feeding tube meaning Jemma and her partner administer a blended version of their own meals, reports Edinburgh Live.

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“Yes, my backpack contains the charger to my body!”

Oh, sorry! Was that awkward? I tend to do that. As a feeding tube dependent individual, I have my share of funny, messy, and occasionally mortifying moments.

I have “fed the bed” so many times, as many people with feeding tubes do at some point. Nothing like waking up covered head to toe in feeding tube formula. All the “tubie clips” in the world and I always manage to get my slack tubing caught in the car door, around a doorknob, catch it on my wheelchair, get my tubing hopelessly twisted with my IV tubing, or I will plain step on it! The laundry machine always seems to “eat” my favorite tube pads as well… Do you think that they go where socks go to hide? A good conspiracy theory if I say so myself.

Pump goes off during my statistics exam in college? “Meg, you are beeping!” my peers exclaimed. Looking back, it is so easy for me to laugh at those awkward moments with a feeding tube as a teenager and young adult. If you took a good hard look at me, you would not even guess there is a pump in my backpack or a hole in my abdomen straight to my stomach!

I have not been feeding tube dependent my entire life, and so many people think that feeding tubes are for babies, young children, and the elderly. That is just simply not the case. Adolescents and young adults tend to get “lost” in the feeding tube community though. I have a rare neurological, autoimmune disease called stiff person syndrome (SPS). Silly name, but a very serious disease when it affects the function of organs the way it has compromised my stomach and digestive tract. SPS causes the bottom of my stomach, the pylorus, to spasm. It was one of the first ways my SPS manifested itself and it is not a very common way to have the disease process start. I received my first feeding tube at the age of 18.

I will never forget the day I finally decided that I had to join the “Super Tubie Club” and become one of the 300,000 tube-fed individuals in the United States alone. I was laying in the ICU holding room of the Johns Hopkins Emergency Department. My jaw was in spasm to the point that I could not open my mouth. Medications that could only be given to me by mouth were not options and after a year of getting a new feeding tube almost every month, the gastroenterologists started having serious conversations with me about having a surgical feeding tube placed. I was in denial that I was “that sick,” but I quickly realized my body was giving out on me and I needed medical intervention fast. As soon as I said the words giving consent, it triggered a sequence of procedures to get me on the operating room board within 24 hours. I was malnourished and underweight, but some people are overweight and malnourished. Everyone needs sufficient nutrition, no matter their weight.

Unfortunately, I believed many of the myths about feeding tubes, and I mean, who really wants to be connected to an ambulatory feeding tube pump 23 hours a day? My nutritional options are limited to what I can get in a container or can. I learned with time that I could still suck on hard candies or a lollipop to get me through all the times where I want to eat, but I know I will not be able to keep it down. Some people with tubes can eat small amounts by mouth. Some supplement with feeds overnight and eat what they can during the day.

One thing I wish someone would have warned me about was that I was going to be in a significant amount of pain. Now, pain is all relative, but I have spoken with many others that also have surgical tubes and I think that for the most part, we agree it was at least uncomfortable, which leads me to the next myth, there are many different kinds of feeding tubes. Some are inserted through the nose and down to the stomach and/or small intestine. They are typically only used for short periods of time before a doctor may discuss a surgical tube.

Feeding tubes do not always stay in forever. Some people will only need them for a short time and others are lifelong tube-feeders, which means some people live their daily lives outside of the hospital and some only need the tube in a hospital setting. Tube feeding is a life-sustaining therapy, but they are not only given to those that are dying exclusively as end-of-life care. Everyone is different!

Many people see feeding tubes as a scary intervention and well, that is one thing doctors do not tell patients. Being tube fed is a lot of work and it does not always “end your symptoms,” but so is being malnourished, failure to thrive (FTT), and being dehydrated, which is what would happen to me. My feeding tube keeps me out of the hospital. I cannot explain the energizing feeling when my body started to receive adequate nutrition. My feeding tubes have saved my life because they allow me to receive adequate nutrition, hydration, and medication that I crush, dissolve in water, and push through the tube. I hope I was able to bust some feeding tube myths from my experience.

Link to article with picture of Meghan here.

Wee Willa Price is finally discovering a world of culinary delights that do not come from a feeding tube. So far, the five-year-old is partial to honey garlic chicken wings and the messier the better.

“She can drain a pound of those things,” says her dad, Harold Price, happily.

All-dressed potato chips are a hit, too, as is Vietnamese food.

Hummus, not so much. It’s too much like what comes in her tube.

Still, surviving on regular food is a year or two away for Willa. So, 10 or 12 times a day, her parents or teachers fill a large syringe with a sort of super-smoothie and shoot loads of proper nutrition through a surgical hole, called a “mic-key button,” just left of her navel.

“She’s really not a big fan of that mic-key button, anymore,” says her dad.

Willa has Noonan spectrum syndrome. It offers a smorgasbord of effects, including developmental delays, facial traits and muscle weakness.

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This holiday season, Antonio Zamora and Marlene Campos have two miracles to be thankful for: their twin boys, Giovani and Jonathan, who were born at 24 weeks. Weighing less than two pounds each, they survived many complications shortly after birth.

But luckily for the family, they had a third miracle to be grateful for: Amy Kuzmich, the clinical nurse specialist for pediatric gastroenterology at UC Davis Children’s Hospital. Kuzmich helped the family through some of their darkest days in the hospital.

Giovani was diagnosed with necrotizing enterocolitis (NEC), a serious and often deadly condition in which the intestine is invaded by bacteria and the tissue dies. Half of Giovani’s gut needed to be removed, and he had an extensive bowel resection surgery.

After surgery, Giovani required care for short gut syndrome, a condition in which the body can’t absorb enough fluids and nutrition because a part of the intestine has been removed.

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12/09/21

TULLOW gardaí got a new recruit in the shape of the extraordinary Aidan Maher last week. The 16-month-old donned his new garda cap and met his colleagues Garda Martha Hughes and Garda Darren Leahy at his home in Phelim Wood.

Aidan was made a Little Blue Hero Honorary Garda after being nominated by staff at Crumlin Hospital.

At just five weeks’ old, Aidan first showed worrying signs and weight lost. Aged eight months, Aidan was in intestinal failure and was placed on Total Parenteral Nutrition (TPN), also known as intravenous or IV nutrition feeding. He spent much of his first year in hospital before coming home to Tullow in August, where he has blossomed into a bubbly toddler. However, he remains dependent on TPN.

Aidan was given a garda peaked hat, a beanie hat and t-shirt and a little teddy bear by local gardaí. Along with his dad Nigel, Aidan also got to go inside a garda car.

“They were beeping horns. I don’t know who was the bigger child,” laughed mum Josephine. “Aidan definitely enjoyed it. He interacted well with the gardaí. They were very approachable. He was chatting to them.”

When he is not being a garda, Aidan loves the outdoors, listening to the sound of the ocean and being at the seaside. A fan of Coco Melon and Peppa Pig, his favourite music is Christina Perri.

Josephine said: “He is the bubbliest little boy. Very, very bubbly and full of devilment! He is into everything!”

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www.shine.cn, 12/03/21

Experts from Shanghai 9th People's Hospital announced the success of helping a woman with short bowel syndrome to get pregnant and give birth to a pair of healthy twins, who are now three months old.

The woman underwent repeated surgeries on her small intestines, and at last resection of a substantial portion of the small intestine. So she has suffered short bowel syndrome, a devastating malabsorptive condition resulting from extensive loss of intestinal length, and has had to depend on intravenous nutrition support.

Dr Li Yousheng helped her move beyond intravenous support and lead a normal life.

She got married in 2014 and was unable to get pregnant due to her physical condition. Her request for in vitro fertilization (IVF) was denied by various hospitals due to her pelvic adhesions, the result of multiple surgeries.

She turned to Dr Li again and was introduced to different departments to solve her problem.

Dr Wang Yao from the IVF department removed six eggs from her in August 2018. Since she suffered various problems on organs and tissues like ovary, gall bladder, fallopian tube and the pelvic tissues, doctors decided to solve all these problems before carrying out the fertilization procedure.

A series of treatments were conducted until March 2019.

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People.com, 10/19/21

A Massachusetts father is going the distance with his 10-year-old daughter as they race to find a cure for her rare neurological disorder.

Greg MacCurtain and his daughter Abigail "Abby" MacCurtain recently competed in their second consecutive virtual Boston Marathon on Oct. 10. Greg pushed Abby in a running wheelchair as they raised money for research on Leigh's disease, with which Abby was diagnosed as an infant.

Competing under the name "Team Abby Mac," the pair have raised over $10,000 this year, which Greg says is a testament to Abby's positive spirit.

"It feels great," Greg, 44, tells PEOPLE (The TV Show!) on Tuesday's episode. "With any marathon, there's a lot of ups and downs... but she keeps me going. She's all smiles."

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pulse.seattlechildrens.org, 10/19/21

When a pregnant Heather Henson learned her baby, Dawson, had hypoplastic left heart syndrome — a rare and serious condition where the left side of the heart is not fully developed — she immediately began researching the disease and the hospitals that treat it.

Heather and her family live in Anchorage, Alaska. The state doesn’t have a pediatric hospital equipped to perform the heart surgeries Dawson would need to survive, so she had to give birth somewhere else.

During her research, Heather found an HLHS Facebook group where other parents shared their experiences with the disease. Stories of successful surgeries and thriving babies gave her hope, but she worried when she saw many children who relied on feeding tubes after their surgeries.

“I did not want to return to Alaska with my baby on a feeding tube,” Heather said adamantly. “With all of the medical issues we worried about, we wanted Dawson to be able to eat normally and not have to suffer through tube placements and further complications.”

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upworthy.com, 8/18/21

Val Kilmer has had a very unique acting career. He's played the leading man in major hits such as "Batman Forever," "The Doors," and "The Saint" while also portraying memorable, scene-stealing character roles in "Tombstone," "Heat," and "Top Gun."

He also showed a flair for comedy with his performances in "Real Genius" and the Zucker Brothers' brilliant "Top Secret."

But his career as an actor all but ended in 2015 after he lost his voice after undergoing treatment for throat cancer. The treatments reduced his voice to a creaky rasp and he uses a feeding tube because he can no longer eat.

To read more on Val's story, click here. 

www.halifaxcourier.co.uk, 8/2/21

A man who was diagnosed with a tumour five years ago and now has to feed through a tube is set to kayak from Liverpool to Goole for charity.

Gary Taylor, 46, was diagnosed with a rare schwannoma tumour in 2016 and underwent invasive surgery to remove the tumour, found to be benign.Initially told he would need to tube feed for six weeks to aid recovery, complications meant that Gary is still fed via a tube.

“After the worry of the tumour, it was a further stressful time for me and my family. I had the inability to swallow and had to come to terms with tube feeding”, explains Gary.

“After surgery, I didn’t want to leave hospital and I was worried on how my family would cope. I was at a low ebb.”

Gary received help through the charity PINNT which exists to help provide support and understanding to those adapting to life on home artificial nutrition.

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www.kten.com, 8/2/21

SHERMAN, Texas (KTEN) -- Kameron and Stephanie Brooks struggled for years to find clothes that worked for their daughter with special needs. So they created an adaptive clothing line for children with disabilities.

Four-year-old Charlotte has cerebral palsy. Her family was concerned about maintaining her privacy while feeding and changing her in public.

"Most changing tables don't allow for kids with special needs to be on it, unless they're infants," Kameron Brooks explained. "So, for public settings and changing her, it's either laying her down on the public bathroom floor or in the back of our car."

The usual clothes you can find in stores made her feeding tube and diaper inaccessible.

"We had to strip her naked to feed her, to give her medications, and do anything we need to do to change her diaper, etc.," Kameron said.

The Brooks had the idea to create a clothing line for kids with disabilities. Their first adaptive product is a romper featuring hidden slits to access feeding tubes, and a zipper along the bottom to change a diaper easily.

"This was just birthed out of a desire for our daughter to be taken care of in public settings without feeling embarrassed," Kameron said.

There are a few adaptive clothing brands, but the Brooks say those usually only cater to one disability at a time, while their designs adapt to multiple conditions simultaneously.

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secondwavemedia.com, 7/29/21

This article is part of State of Health, a series about how Michigan communities are rising to address health challenges. It is made possible with funding from the Michigan Health Endowment Fund.

For the past 23 years, Krista Assman has devoted herself to caring for her son Skyler. Born with a rare genetic disorder, mitochondrial disease, Skyler lives with profound disabilities. Assman meets his every need: transport from wheelchair to bed, personal care, tube feeding, and monitoring his oxygen levels every night as he sleeps in a special zipper-enclosed bed that prevents him from falling on the floor. As an only parent, being able to take an occasional break from caring for Skyler has been invaluable for Assman.

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The Nationalist, 7/15/21

A TULLOW family have issued a heartfelt plea to help them bring their little boy home as he battles a severe-yet-unidentified condition that’s causing his intestines to fail. Eleven-month-old Aidan Maher has spent the majority of his young life in Our Lady’s Children’s Hospital, Crumlin, showing remarkable resilience despite the enormous medical challenges he faces.

“Everyone has been amazed by him – he’s been through so much, but he continues to fight. He has so much potential, he’s amazing,” says his proud mum Josephine from Phelim Wood, Tullow.

“What we really want is to be able to bring Aidan home from hospital, to be back together as a family. We are also fighting to have Aidan brought to Great Ormond Street in London for more intense tests and studies to try to learn more as to what is causing his intestinal failure,” adds Josephine.

“His intestines are failing, but we don’t know why.”

Josephine and husband Nigel have five children – Keiran (12), Roisin (13), Darren (15) and Conor (16), with baby Aidan their youngest. The couple have set up a GoFundMe page titled ‘Bring Aidan Home’ in the hope that the public can help them bring their little boy home and support them in getting the answers they need.

Born at 34 weeks following IVF on 1 August 2020, at just five weeks’ old Aidan began showing signs of failing to thrive and rapid weight loss. It was the beginning of an incredibly difficult emotional journey for the Mahers, with many surgeries, procedures and tests carried out on their much-longed-for infant, as medics tried to get to the root of his condition.

“Going through it all and thinking back, it’s just hard to believe what’s he’s been through … it’s been a journey,” admits an exhausted Josephine.

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www.3newsnow.com, 7/14/21

OMAHA, Neb. (KMTV) — Ally Winter has been in Omaha for about a month after receiving care at Nebraska Medicine.

The 17-year-old from Tennessee has battled chronic, rare illnesses most of her life.

"When I was four, I got short bowel syndrome from a volvulus in my intestines," she said.

She started crocheting as a child, but a few years ago she became more passionate about it and started crocheting daily.

"I do it all the time and it helps my mental health and it's like a therapy," she said. "It gave me something to look forward to because I can't work like a normal job, but this I can do, I can rest and still crochet and post things and sell things."

She has an Etsy page where she sells creations and takes orders.

Click here to read more on this story.

***Ally is a long-time Oley Foundation member, her mom is an Oley Ambassador, and Ally previously won the 2017 Child of the Year Award Winner

epidermolysisbullosanews.com, 7/8/21

I’m avoiding packing. I have a two-page packing list with three columns per page staring up at me from my kitchen counter. I feel the printed pages mocking me as I pace the floors trying to get started. We leave for the beach in 48 hours, and I’m frozen in inactivity. Where is my motivation? Who will save me from this madness?

My husband just asked me, “Are you excited for the beach?”

“No way, man,” I replied. “Not until we’re in the car.” I can never relax until we’re in the car.

Making sure we have all the things is sometimes enough to make me want to stay home. Things are better now that I have a nurse to help, but for the first seven years of my son Jonah’s life, I dreaded packing more than I desired a vacation.

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https://cysticfibrosisnewstoday.com, 7/8/21

“Everybody’s gross.”

It’s a motto that I live by, as well as the opening number of my original musical comedy about a girl with cystic fibrosis, “Fall Risk.” Cystic fibrosis (CF) patients have an unfortunate amount of mucus that overwhelms our entire bodies. This leads to excessive sweating, stinky breath, a contagious-sounding cough, the occasional need for surgical implants like feeding tubes — you know, everything a teenager desires.

I’m grateful to announce that I have 10 scars from different lifesaving operations … but I didn’t always feel grateful.

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LITTLE ROCK, Ark. — A Little Rock student’s creativity and love for her sister, is teaching others a lesson about inclusivity.

Isabel Hansen is going into fifth grade next year, and in fourth grade at Forest Heights, part of the Little Rock School Districts’ STEM academy, she was given a unique task.

“We did a project where you got to come up with your own invention,” Isabel said.

Click here to read more on this story. 

https://www.abc.net.au, 6/01/21

A new app, developed in Queensland, is helping families of sick children manage a stressful part of their health care.

Researchers estimate between 10,000 and 20,000 seriously ill children in Australia need an intravenous (IV) line or catheter each year.

Gold Coast boy, Oliver Glover, 2, is one of them. He was born premature, with a bowel obstruction, and spent the first eight months of life in hospital.

"After he was born he went into surgery and lost most of his small bowel," his mother Kelly Glover said.

"So, he's got a central venous catheter in his chest, which provides him TPN (nutrition) six nights a week."

Click here to read more on this story.