Imagine facing a situation where your darling child has been born and very soon was been diagnosed with an exceedingly rare illness (only sixty patients in the world are known to have it). You are faced with a situation that there is no known cure, not much research being done and consequently treatments and medical care are very expensive. And the disease is progressive but not that fast, so you have to watch your child slowly suffering. You literally see your little bundle of joy diminishing right in front of your eyes. I cannot imagine this, but my friend is currently going through this and he needs help. And I resolved to help out by whatever little I can do.
I was introduced to Colin last year on a work related matter, but after the work matter was finished, we spent quite a long time talking about boxing. He is a boxing aficionado and also is a sparring partner to the great and good of London-based boxers.
I used to box when I was a young and callow youth, before my knee gave out. It is a fun exercise and something that really gets the adrenalin going. So he became a friend, anybody who has (voluntarily) been on the receiving end of a boxing glove aimed at his jaw with bone-crunching force is guilty of divine madness and courage. And over the next few months, whenever we bumped into each other, boxing came up first and then much more.
Yesterday, he walked across the floor and I waved to him. He nipped over, shook my hand and said: "Well, BD, I won't see you for few months now". I thought he was going off on a sabbatical like people often do to go off for some studies, or learn a new language or what have you.
No, he said he was going over to the USA to see about his little daughter's treatment. I gaped and asked, excuse me? For a few months? He quietly said, "Yes, mate, a few months; the first few months for research and investigation and then many more months for her hip replacement and fixing other leg bones and knee issues".
He praised the bank's management in allowing him such a long time off. (I agree; the bank is very good indeed on people issues!) I really did not know what to say and when I asked about more details, he said he did not have time right now, but pointed me to the website, http://www.tillysappealfund.com/.
I felt like I was on the receiving end of one of his boxing fists. My sister and I spent some time checking out the website and then did a bit of research on the web and then spent some time hugging each other.
Tilly has been diagnosed with CINCA/NOMID syndrome. It is and I quote:
"a rare congenital inflammatory disorder characterised by a triad of (i) neonatal onset of cutaneous symptoms, (ii) neurological symptoms, and (iii) joint manifestations with recurrent fever and inflammation. The first symptom of skin rash occurs at birth or in the first 6 months of life. A progressive neurological impairment results from chronic meningitis and secondary cerebral atrophy. Progressive visual defect and perceptive deafness frequently occur with increasing age. Joint symptoms manifest as recurrent flares. The course of the disorder is one of chronic relapsing inflammatory disease with fever"
I am not medically qualified by any stretch of the imagination. I am only first aid qualified I am afraid, but the first thing I did when I got home that day was to hug my little girl and squish her very tightly until she squeaked and scolded me. I have to admit I went all teary and emotional. Colin is a rock; you will know what I mean when you read his blog and comments. He is positive, strong and courageous. I do not know his wife, but I am sure she is just as strong, courageous and determined. I am not sure if I could ever be like them if I was in the same situation. Hats off to them.
There is no drug therapy to cure this syndrome. One can only alleviate some of the symptoms and the joint issues and degeneration can only be addressed after painful joint replacement surgery (hip replacement, knee replacement etc.). Read her story here.
www.Tillysappealfund.com
I mean, if I went even through 10% of this, I would be a gibbering mess. I cannot imagine the pain and courage required for a parent to see their child go through this,
At this very moment, what needs is hope, prayers and load of funds to help support her research, medicines, surgery and nursing. Her parents and her brother have, very courageously and bravely, put their lives on hold to help move forward.
Tilly has been extra-ordinarily brave to shoulder the pain, the constant poking and prodding and a lifetime of hurt. See the pictures to see how brave she has been throughout her as yet still rather short life.
Looking at the most recent picture of Tilly, a beautiful brown-haired, smiling-faced image of innocence, I am reminded of Václav Havel's quote: "Hope is definitely not the same thing as optimism. It is not the conviction that something will turn out well, but the certainty that something makes sense, regardless of how it turns out." Please let us all join in to help as much as we can in making this turn out well for Tilly and her family.
Between all of us, we CAN and we WILL make her better.
www.Tillysappealfund.com
Can you help? Please help this brave girl and her loving family. Please contribute whatever you can spare to her appeal fund. Please visit the website and leave messages of support. Do forward this essay and the website address to as many friends and family you have and can. This is not a forward joke, but a real life little girl who needs your help. Please do mention her in your prayers to whichever God you believe in. And hug your child, niece, nephew or your neighbour's child when you finish reading this. I am sure God will listen to that prayer.
http://www.tillysappealfund.com/
And for the first time, all this to NOT be taken with a grain of piquant salt but hopefully with a generous heart!
www.Tillysappealfund.com
Tags:
disease Family Friends god people therapy 
