I wish you could see just how special our thirteen-year-old daughter, Heather Danielle, is to us.  She is a blessing in disquise and manages to touch everyone she meets.

Heather was born seemingly healthy; then about the age of one and a half, she started exhibiting puzzling behavioural issues; by the age of two and a half, her behaviour became rather unmanagable, giving to frequent temper outbursts, insomnia, and pica.  She also appeared to have stiffer than normal joints.

We became increasingly concerned, so we took Heather to our pediatrician.  Our pediatrician, in turn, suspected something big was going on, so he had us see a doctor specializing in genetic diseases; he suspected something genetic was going on.  It scared us; we didn't know what to expect or what would happen.

Extensive tests were performed.  It hurt us to see our daughter being prodded and poked with needles and having to go painful procedures; her screams tore at our hearts; yet we knew that this was necessary to see what was going on with her.  We needed answers, so we had no choice but to subject our daughter to this barbaric treatment. 

The news was bad.  Very bad.  We were told that Heather had muco poly sacchiardosis, a very rare genetic condition affecting Jews from Russia or Poland the most; my husband and I were unknowingly carrying the defective gene, and we subsquently passed it on to Heather, our daughter. 

The doctor said to expect increasing delays in her behaviour, physical, cognitive, and mental development.  Eventually, Heather would end up in a wheelchair and maybe developing seizures and difficulty in swallowing, which would probably lead to placement of a feeding tube, either in her nose or in her stomach.  The news was absolutely devastating, as you can probably imagine.

He said the disease was fatal:  he didn't think Heather would live to see her later teens or twenties:  that meant that she would never graduate from high school.  Go on dates.  Learn to drive a car.  Go to college and choose a career.  She would eventually become totally dependent on us (and on trained medical staff) to care for her needs.

By the age of five, Heather lost her ability to walk.  She now needed a wheelchair to get around.  She was also prone to frequent outbursts of rage and often ate things like dirt or rocks.  She also didn't sleep for more than three hours every night.  We tried our best to provide for her, to give her the love and support she needed, but it was difficult at best.

At the age of eight, Heather started to have seizures.  She still has them now, but they have only increased:  she has anywhere from twenty to fifty a day; some are so bad we are worried that she might fall out of her wheelchair.  We have to keep her belted in or she will more than likely end up on the floor.

In addition, she has breathing problems.  She has to use oxygen at night; twice in the last month she has had to be rushed to the ER because her breathing got to be so bad.  We were so scared we were going to lose her; it was only by a miracle that she survived.

Heather is now thirteen, as I just said.

Heather is a beautiful little girl with long, dark brown hair often worn in pigtails, big, bright dark brown eyes, and rosy cheeks; she is exceptionally pretty, as many children who have devastating conditions seem to be.  She is our only child; she is our world, the center of our lives.  Our world revolves entirely around her and her care; the goal of our lives right now is to keep her as healthy as possible and to prevent yet another hospitalization.

I wouldn't wish this kind of life on anybody.  She is unable to talk, walk, eat without help (we feed her), but she can, on the other hand, see and hear.  She is rather smart, but we are wondering just how long it is before her mind goes and she ends up becoming mentally disabled.  She just can't do much otherwise.  Heather has also become dependent on diapers; she's lost her ability to go to the restroom on her own; I know it must be degrading for her.  I know it is for us.  Yet, like the dutiful, caring parents we are, we care for her, regardless of what her needs are.  We love her so much.

We know her death is inivitable, but right now, we focus on the hare and now.  All we want is that a cure is found for these terrible diseases that are robbing children of their livlihood and their very lives in her (and in our) lifetime; we don't want another child to suffer or go through what our daughter has had to in her thirteen years of life.

All we can do now is wait, hope, and pray like there is no tomorrow.  And provide for our girl as best as we know how.

I will write in here again soon with another update about us; this isn't the last you have heard from us!  Take care and may Yeshua bless you always!  Just keep us in your prayers; it is only by grace that Heather is still here with us!  Thanks in advance!

Sincerely, Morris and Eden Rankowski, Calgary, Alberta, Canada.  :(

*to be continued.*