charlie gard and dad

After a lengthy legal battle, Charlie Gard, the U.K. infant whose parents fought for him to come to the U.S. for an experimental therapy, died on Friday.

Earlier this week, after months of petitioning multiple British and European courts, Gard’s parents, Chris Gard and Connie Yates, ended their petition after the U.S. physician reviewing Gard’s case said it is too late to give him the therapy.

According to The Guardian, Gard was moved to a children’s hospice center on Thursday and passed away on Friday.

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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I love celebrating special occasions. I’m a real “Hallmarks moment” kind of girl. Always have been and I suspect I always will be. Cakes, balloons, lots of presents and good food. I especially love making the person who is celebrating their special day feel like they are the most important and loved person in the world.

You would think though I would realize those days may be a bit beyond my reach now, wouldn’t you. Wouldn’t you?

I have a rare disease; my bones break spontaneously. I have two non-healing broken femurs and feet plus other bone-related issues. I also have rheumatoid arthritis and a permanent colostomy. Saying I’m a little limited in what I can do is a slight understatement.

 

Despite that, I apparently still think I can be a picture of perfect health and energy when it’s my husband’s birthday. He is so special to me that there is no way I am not going to make his day as extra special as possible.

Our first plan is always to go out for lunch, and we pretend in the lead up to his birthday we will be doing that. We pick the restaurant or cafe, check out the menu online and get excited. We do this knowing it most likely won’t be able to happen. The effort for me to get out will spoil the day. By the time I get to a cafe I’m so exhausted it’s hard to talk, let alone make it feel special for my husband.

We know that at least at home I can pace the day and have the energy to get through all I want to do for him. At home I can lie down for 10 minutes here and there whenever needed to recharge a little. I will be determined to make a great lunch with my husband as my kitchen hand. Instead of a restaurant we will sit in our courtyard and both agree it is the nicest café we have been in for ages…even if we do say so ourselves!!

We will eat way too much and my husband will open a special bottle of wine he had been saving for a special occasion. I won’t drink because of my medication but he will say it was fantastic. He always does!

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After lunch we will watch a movie on DVD in our living room, in Gold Class style and drink coffee and eat more cake. It will be a really lovely day, it always is. Although it will just be the two of us and quiet in so many ways in comparison to what most people would consider a celebration, it will still be a “Hallmark moment” – no, actually it will be a “Hallmark day.”

If history repeats, the next day I won’t be able to move, and apart from the physical pain, I will be struggling with unbelievable exhaustion. All from doing so little. I’ll remind myself it was worth every moment and I will definitely be gearing up same time next year to do it all again for the man I love so much and who cares for me so beautifully every single day!

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Thinkstock photo via nyul.


Imagine countless trips to the doctors and hospitals just to be told there were no answers as to why the symptoms were occurring and sent home with a handful of referrals being passed between medical professionals like an envelope with no return address. Then imagine, this is your child and all the specialists you have been referred to have no answers. You have hit a roadblock, but as mothers we know when something’s wrong, and we will persist until we have an answer.

Finally you were given an answer; you were told this was a rare genetic condition but no one knew how to diagnosis it. All the symptoms were not related to this genetic condition, and furthermore there is no established “clinical term” for it. What would you do? Where would you go next?

I am a mother. I am not perfect. I have shouted. I have lost my temper and occasionally I need time-out.

I am me. I laugh at things I probably should not. I have felt loss, I have felt pain, I have climbed mountains and tripped over life time and time again.

I have lived through a divorce and have learned to love again.

I have been woken up, I have been pushed down and pushed up, I have thrown up, I have lived up and shut up — but I have never ever given up.

I will not let the unknown scare me. I will continue to climb and soar through life’s challenges. I am a fighter, a fierce worrier. I am me.

I have four children all uniquely special — a 4-year-old son, 5-year-old daughter, 6-year-old son and 7-year-old son.

My 6-year-old has a rare genetic condition 2p16.3 microdeletion — deletions at 2p16.3 involving exons of NRXN1 are associated with autism, schizophrenia (SCZD17), developmental delay, intellectual disability, and dysmorphic features.

My son has minor scoliosis, spinal bifida (the MRI could not pick up spinal bifida at the S1; this can only be seen on an x-ray), generalized weakness, hypertonia/hypermobility (upper and lower limbs), reduced muscle mass, back pain, speech sound disorder, swallowing difficulties, motor coordination problems/dyspraxia, fatigue, poor weight gain, mild gait, posture/balance problems, skin tags at the base of his spine, difficulties with core stability, ADHD and seizures.

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Whether he has outgrown some of the above or it’s showing in a different way or being misdiagnosed is unknown. Through these challenges in life and the times when I felt lost and had no idea how to keep moving forward, I did… we did… we are and still are. We gain the power to have an unstoppable mindset.

The first time I held him, I felt a feeling deep inside something was off. I called for the doctor, who checked his breathing but affirmed he was fine. He said to brush off my worries. A mother’s instinct burst out and showed its true force in the form a fighter with extreme superhero strength, voice and abilities.

Ten minutes later I demanded an x-ray, to which I was advised against. However its results showed my son had a hole in his lung, which required him to be in a special care unit for five days until he recovered.

From this point in time, between endless medical visits, facing a broken marriage, studying, working, becoming a single mum, going through family court, finding love, new marriage and every other struggle in this journey called life, my story has become richer and fuller.

We all go face struggles, but we all get to choose how we respond. You are a living testament, standing proof of the human potential. Never underestimate the power of a mother’s love.

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Thinkstock photo by Koldunov


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.


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.

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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

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