Connie Yates and Chris Gard holding their son Charlie Gard

On Monday, after months of petitioning multiple British and European courts to let their son Charlie Gard come to the U.S. for an experimental treatment, the 11-month-old’s parents have ended their legal fight.

According to BBC, a lawyer for the child’s parents, Connie Yates and Chris Gard, said Charlie’s “time had run out” and that his family would not be seeking treatment in the U.S. after the U.S. physician reviewing Charlie’s case said it is too late to give him the therapy.

The Gard family has been petitioning court decisions since February when the hospital treating Charlie asked the courts if it could switch the child to end-of-life care. Charlie was born with mitochondrial depletion syndrome, a rare disease which doctors at Great Ormond Street Hospital for Children (GOSH), the hospital caring for Charlie, say is untreatable.

Charlie’s parents wanted to take him to the U.S. for nucleoside therapy treatment, an experimental therapy, and had raised more than $1 million to continue their son’s care in the U.S.

As news of Charlie’s story spread earlier this month, Donald Trump and other U.S. politicians shared their support of the Gard family, offering to help coordinate treatment in the U.S.

The lawyer for the Gard family said Charlie’s family will set up a foundation in honor of their son.

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It’s been nearly three years since my left femur snapped in two.

Those first two years I can barely remember. It’s a blur of surgery after surgery, hospital stay after hospital stay, recovery after recovery. Actually recovery is probably the wrong word because I haven’t recovered. My left femur is still broken. It’s officially diagnosed as non-union.

A pole holds it together but the two pieces of bone, being compressed together by an interlocking screw at the base of the long rod, rub constantly and cause unrelenting pain. My right leg has a femur stress fracture and that too is being supported by an internal rod and not healing. That too has aching pain on a daily basis despite a regime of strong painkillers.

My feet also have multiple, constant, non-healing fractures, although amazingly these only really hurt occasionally. It may be the other pain is just greater. I have muscular atrophy and bone marrow inflammation in both legs. I have sclerosis in my spine and severe damage to most of the discs in my neck and back.

All of the above is a result of my rare bone disease. It has no cure or treatment so the disability and pain are here to stay.

Rheumatoid arthritis sits alongside my bone disease and has its own set of varying symptoms and pain issues. It is joined by Sjogren’s syndrome, trigeminal neuralgia, inflammatory nerve disease and autoimmune thyroid disease is also starting to present itself.

Managing these disabilities and using double crutches makes getting out and about difficult, especially when I have to factor in my permanent colostomy and the care that needs at its beck and call. So, the above are the facts, the reality of my situation. Facing facts and realities of this nature can pretty much do one of two things:

1. Cause extreme depression, or…

2. Motivate you to make a plan to live well with your diseases.

From the outset I’ve chosen to embrace my situation and plan for the future as much as possible. That plan has included a multi-faceted approach, including:

1. Medical retirement

2. My husband becoming my full-time carer

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3. Care agency support

4. Building a strong relationship with my medical team

5. Installing a stair lift

6. Installing bathroom/toilet rails and making other changes to our home to cater to my new needs

7. Keeping my brain active through blogging/writing

8. Setting up an online forum, Medical Musings With Friends, to connect with and help others living with chronic and complex diseases

9. Enjoying the little things in life every day, caring for my soul as well as my body

10. Planning for my future care with permanent residential care approved, if/when it’s needed

The list could be expanded as there are lots of other things I do to ensure I embrace life within my limitations, but you get the idea.

One thing I’ve struggled with is getting out of the house, other than for medical appointments or a coffee at our local cafe. My husband and I have often discussed an electric wheelchair or mobility scooter, but I always wanted to wait and see if my leg would heal. I felt I was giving up on the hope it might heal if we went down that path.

As my three-year anniversary of my bone disease diagnosis approaches, I know it’s time to face some more facts. My disease is a permanent disease. Even if my leg could heal it won’t heal properly as the bone and muscles are dead and the nature of my disease is that I have low to negligible bone turnover. Pain and disability will be my lifelong companions.

I’m not looking to go on great overseas adventures or long trips, but I would like to stroll in the park with my husband or go to a Westfield shopping center every now and again. I can’t do that on crutches. At best I can walk 100 meters on a good day, but that is a huge stretch for me and is painful and exhausting.

So, it’s time…time for a new “leg” of my journey to begin. That leg starts with a mobility scooter. It arrived this week and we registered it today. I am the proud owner of new legs…well, wheels to be precise!

It’s not without its challenges because the suspension capabilities of the scooter are limited and the vibrations through the seat aggravate the pain in my legs where they are broken. We’re getting a gel cushion which will help alleviate that to some degree.

I’m hoping with time my legs will adjust to it and allow me to stay out for longer trips. To begin with, we will start slow. A short outing to the park will be wonderful. I can’t wait.

Life with chronic disease requires constant adjustment. There are never neat and easy answers. The answers to our problems are often life-changing and take time to digest. For me the key is not to give up looking for solutions to new issues.

We might hope for a particular outcome only to discover that’s not possible, but don’t lose hope. Find it in a different outcome. It’s a bit like a sailor adjusting the yacht’s sails when the wind suddenly blows in an unexpected direction. That happens with chronic disease all the time and we have to find new ways to cope when previous ways cease working.

So far I haven’t gotten any further than our garage on my new legs, but stay tuned, as I’m sure I’ll soon be writing an article all about “The Adventures of Sam and her Sleigh.”

“As we trust God to give us wisdom for today’s decisions, He will lead us a step at a time into what He wants us to be doing in the future.” – Theodore Epp

If you’re looking for genuine support, care, understanding and friendship, you are so welcome to join my closed Facebook support forum Medical Musings With Friends. It’s a safe place to connect with others living with chronic and complex diseases, who truly understand the daily challenges. A warm welcome awaits.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via berdsigns.


It is a gorgeous day. We even remarked on the way in to the check-up that it was a perfect sunny day. We breathed in the warm air, soaked in the sunshine, meandering through cars on the way into cool, clean, hospital air. I thought the day would pass like any other. Do the copay, be brave through the lab stick — regular visits are my child’s normal. But even our norm gets jolted sometimes.

The doctor was quiet during exam, and it seemed his typing was lengthy too. I found myself already hoping it was nothing, just the usual thorough procedure. My daughter even questioned, “How soon will he be done?” My little star patient. And then he turned to me. Serious. Compassionate. And he quietly told me we had another change, one that requires the neurologist. We already see so many specialists, but oh, this one?

The breastplate of new diagnosis clicked into place, a weight pressed on me, as has happened before. Always a normal day, turned abnormal. A parent with a chronically ill child knows the weight. It isn’t exactly fear, or sadness, not an instant heaving — it is a physical cloud, come to sit upon my center.

 

As I walk around, parking lot, grocery store, I know no one can see it. So I breathe deeply, wishing the extra oxygen would lift the weight. It is no use. I pray and give my worry to the Maker, but the weight still sits and settles. I call and talk to the nurse. The weight remains.

Maybe it will last only until we have test results. Oh, but maybe it will be heavier then. Not knowing or knowing — either way, an answer isn’t always a cure. And for all the diagnoses so far, there is no cure, only slow acceptance. We’ve learned to move forward, and I am grateful they have been staggered. I could not have managed the weight of all of them at once.

For now, I sit with solitary knowledge. Do I call my husband at work? Do I interrupt his day to bring him onto the team or do I wait until his day is done — protecting his “normal” for a few more hours?

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Life before diagnosis… was I light and carefree? No. Many of us live differently only after illness or death — for then we often realize what is most important in the mundane, and what is truly worth worrying about (nothing, unless you want to borrow trouble from tomorrow.) I can only live right now, in today, perfectly sunny and warm. Tranquil, but for the weight on my chest.

Follow this journey on rshibbard.com.

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Thinkstock image by anurakpong


July 11, 2017 is National Cheer Up the Lonely Day. It is a national day to promote kindness and support someone who might be struggling financially, grieving or struggling with an illness.

There are a lot of negative effects associated with loneliness and social isolation, but we often forget to focus on the power of social support. Social support can help prevent illnesses, lower stress levels and help people live longer. If you have been diagnosed with a rare disease, one of the first words you might have used to explain how you felt is lonely.

When I was diagnosed with erythromelalgia I felt extremely alone. I kept telling my friends and family about the pain, but they couldn’t understand – but they also wanted to help.

For those friends, family members and loved ones, here are some tips on how to show your support not just on Cheer Up the Lonely Day, but any day.

1. Snail mail: Everyone loves getting mail or a package. Send a package, flowers, a letter or a postcard. It’s hard to think about your illness when you are smiling ear to ear reading a letter.

2. Random text: Send a text message saying a fun fact, funny joke or a silly picture of you and your friend. Take some time to reminisce on the good days.

3. Visit: It is always great when you can visit someone in person. Remember to ask your friend/loved one what works best for them. For me, I can’t always go out of the house because my feet will flare up, so sometimes people have to come to me. Other times, people really want to leave their home and getting out of the house is a great idea.

4. You don’t have to cheer up people: Yes. That is right. People are allowed to be sad, and it can be uncomfortable being around someone who is not “happy,” but that is when friends/loved ones need you the most. Take the time to recognize your own feelings, and why you might feel uncomfortable. Recognize those feelings and sit with them.

Lastly, try to do an act of kindness or support a friend or loved one every day, not just one day a year.

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Thinkstock photo via savageultralight.


4 Ways to Cheer Up a Loved One Who Feels Lonely Due to Illness

Last Tuesday, the European Court of Human Rights denied Chris Gard and Connie Yates’ request to bring their son Charlie Gard, a 10-month-old with a terminal rare disease, to the U.S. for an experimental treatment. As news of the court’s decision made headlines, influential figures from around the world — including the Pope and President Donald Trump — have tweeted their thoughts about the care of Charlie, who is set to be removed from life support.

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The Gard family has been petitioning court decisions since February, when the hospital treating Charlie asked the courts if it could switch the child to end-of-life care. The European Court of Human Rights was the family’s final appeal. Charlie has mitochondrial depletion syndrome, which doctors at Great Ormond Street Hospital for Children (GOSH) say is untreatable. Commenting on a previous court ruling in a statement late May, the hospital said, “It is in Charlie’s best interests to be allowed to die with dignity,” adding that the boy has an “exceptionally low quality of life.”

Charlie’s parents want to take him to the U.S. for nucleoside therapy treatment, an experimental therapy. “We just CAN’T let our baby die when there is something that might help him,” his parent’s wrote on their website dedicated to Charlie’s story. “We won’t give up on him because he has a rare disease. He deserves a chance and he deserves a life as much as anyone else.”

Within months, the family had raised more than $1 million to bring Charlie to the U.S. However, doctors in the U.K. remained adamant that medical treatment, even experimental, would not help Charlie.

“The doctor in the United States has not had the opportunity of examining Charlie but, based on the medical information available to him, has acknowledged that he thinks Charlie ‘is in the terminal stage of his illness,'” GOSH said in a statement.

Since the final court ruling, many people have shared their thoughts regarding Charlie’s care. On Sunday, a spokesperson for the Vatican told Vatican Radio that the Pope is praying “that their desire to accompany and care for their own child to the end is not ignored.”

Others including parents and members of the disability community have weighed in with their thoughts as well.


In my pregnancy, you will never hear me say “as long as my baby is healthy.”

Don’t get me wrong. We all want, wish and pray for a “perfectly healthy” baby. But what if there wasn’t that guarantee? What if you knew there was a chance your child’s life could be a difficult one? What if you knew that chance was 33 percent?

According to the genetic counselors we have spoken to, our child has a 33 percent chance of having a congenital disorder of glycosylation.

No one knows the struggles more than we do. No one knows the numerous hospitalizations, appointments and sleepless nights more than us. No one knows the hard work and determination more than us. It took our son over a year to roll and four years to sit up, and he still needs assistance to ensure he doesn’t fall over and injure himself. A common illness can put him into the hospital for over a week. His body is fragile and we know he isn’t guaranteed a long life. We are aware that our four year journey has been filled with grief and loneliness.

Immediately when I found out I was expecting, I spent days thinking, what are we going to do? How are we going to do this? What if, what if, what if?

Then I would look at our son and the only thought that came to mind was:

Your life is worth living.

His life is worth living.

Not only is he a child with extraordinary needs, he, himself, is an extraordinary child. His smile seems more genuine than anyone I have ever come across. I feel he loves with no expectations or strings attached. He trusts with all of his heart. He has brought us more joy than all of the grief, fear, anxiety and loneliness combined. I wish every single person had the opportunity to peek over the railing and carry him from his crib in the morning. He wakes with unimaginable joy — as if he was thankful for another day. He never gives up — and we won’t either.

I won’t say, “as long as my baby is healthy.”

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Because I know healthy isn’t a guarantee, and for us, it doesn’t change a thing. The genetic counselor reminded me we are already experts. We know. We are not delusional about what we could be walking into. 33 percent. No matter what, we will fiercely love this child and ensure his/her life will be a life worth living.

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Thinkstock image by Ingram Publishing

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