Our Friend Sophia Doebbert

Here is a video about our friend Sophia Doebbert and her family. They have helped support us tremendously since Shira's diagnosis. Enjoy!

http://www.youtube.com/watch?v=RPGClmsUPnQ

Here is an interesting quote about discovery I found enlighteneing. I have been told so many times that some of the therapies I want to use on my daughter are old or old therapies being used again as if that should disuade me from using something that is affective. Dr.'s are funny!! May we pray to g-d that he give our good doctors wisdom!! I hope everyone is having a good week and enjoying life.

'Those of us who deal in science, even the most enlightened of us, have a strong and objectionable tendency to hubris. Hubris for scientists comes from an inadequate knowledge and appreciation of the past. Discoveries are thus made and claimed that are really rediscovered - not new advances at all, but history lessons. I have to concede priority to people who came before me. Rediscovery is every bit as good as discovery, If what is rediscovered is important and was forgotten. It is better still when the rediscovered information has the capacity to improve the lives of those around us.'-From the book THE SECOND BRAIN by Michael D. Gershon, M.D.

I've also been reading something other than medical books lately. I don't know if you have ever heard of Zora Neale Hurston www.zoranealehurston.com
but what a writer. She was an anthropologist as well, a real amazing person. Some of her writing is poetic, earthy. Here's an outtake of a short story. Enjoy!
Shira is doing great. Sammy is in his last Summer Day Camp and will be starting grade 1 shortly. We are so proud of Sammy, what a loving brother to his sister!

The weather here has changed and I have so much yard work. Oh well, can only do so much. Maybe I should buy some goats? Hmmmmm.

Magnolia Flower

The brook laughed and sang. When it encountered hard places in its bed, it hurled its water in sparkling figures up into the moonlight.

It sang louder, louder; danced faster, faster with a coquettish splash! at the vegetation on its banks.

At last it danced boisterously into the bosom of the St. John's, upsetting the whispering hyacinths who shivered and blushed, drunk with delight of moon kisses.

The Mighty One turned peevishly in his bed and washed the feet of the Palmetto palms so violently that they awoke and began again the gossip they had left off when the Wind went to bed. A palm cannot speak without wind. The river had startled it also, for the winds sleep on the bosom of waters.

The palms murmured noisely of seasons and centuries, mating and birth and the transplanting of life. Nature knows nothing of death.

The river spoke to the brook.

'Why, O Young Water, do you hurry and hurl yourself so riotously about with your chatter and song? You disturb my sleep.'

'Because, O Venerable One, ' replied the brook, 'I am young. The flowers bloom, the trees and wind say beautiful things to me; there are lovers beneath the orange trees on my banks, -but most of all because the moon shines upon me with a full face.'

Living With SMA

Dealing with the public and living with SMA is enough to make you loose your mind. We had another person quit working us recently to take on another job that would be better for her career. I don't have problems with people wanting to follow their dreams but I do get upset when they are dishonest and only use us. One of the questions we ask potential employees is, have you applied for any other positions? and if you have and you are hired for that position would you accept it over our position? We have had several employees leave us after answering that they have looked for other work but this is the position they want. We even go so far to inform the potential employee that this is a family you are working with and that we have a daughter with a terminal genetic disorder. We bring to their attention that we rely heavily on them to ease some of the demands for caring for a child like Shira and that this is not the place to take advantage of someone. If you want to take advantage of an employer to make money until your dream job comes along please do so at Starbucks or a company that can deal with high turn over and that is a less important job. People look you right in the eye and insure you that they are honest and that they would never do such a thing. Then, weeks later after lots of effort and training they tell you they got a call back from a job that they really wanted. We are seriously being tested here. Our level of patients for dealing with mediocrities has been taken to an extreme level.

I have to honestly say that the only people that really understand exactly what we are going through are people that are disabled, parents and caregivers of the disabled, or other people faced with or have been faced with life threatening illness. I've had a family member even tell me once after I suggested a video for them to watch on SMA that, "I'm not interested, it doesn't affect my life." I've had other's suggest that we should have no complaints as we made our own choice to care for someone this disabled when we also had the choice just to let her die. I have realized that though I live in the west, in a democratic society that there is still a mob mentality and that there is a lack of caring and positive attitude when it comes to quality of life issues and the disabled. We have people in positions of power controlling and pushing their belief systems on people that do not have the ability to affect immediate change to their direct circumstances and that they are forced to let their children or family members die based on powerful peoples opinions.

So, today people mostly suck! Again, we have found that we have experienced a great outpouring of love and support from where we least expect it and the least from where we most expect it. People often ask, "then what do you want, what do you need?

We have come to realize that when you mention support the first thing people think is, "they want money!" If you ever want to get rid of anyone really quickly out of your life just be bold and ask them to give you money, you can be assured you won't hear from them again. When I say support, what I am talking about is emotional support. Everyone gets on their computer every day and just an email or a quick phone call to let families know you are there is enough. Of course physical help can also be very helpful.

So this is a call to you. Pick up the phone or send an email to someone you know that needs it and keep on doing it. I know that from my work experience I could call 50 people in 2 hours. I did this almost every day to generate leads. Many leads became customers, many leads introduced me to customers and some leads became friends, some leads become customers and friends and remain friends. Its funny how many people can make phone calls for money but they find it extremely difficult to call people that need to be supported. One is fake, make believe, acting while giving someone support is the real you. All I can say is is that if you are not supportive to those you know it is a reflection on you. Think about it. Everyone knows someone who is old, fragile, sick, or grieving. If you are close to these people in good times but aren't there just to listen in times of bad how does that look? Those people you do that to will know you are not friends, and that in reality, you are only shallow acquaintances.

I had an epiphany the other day. There are so many problems in our medical and social systems regarding the care of the elderly and children. The problem is no one cares and no one is being supportive of these adults and children. The viscous cycle of lack of love and support is taking place under the roof of these care facilities and it is a mirror of our society as a whole. It used to be that the elderly were held in high esteem and respected as people of knowledge while the young were depicted as our nations future, but our corporate minds have been branded through extreme marketing to measure ones worth by wealth alone. Unfortunately, chivalry, gallantry, and the lessons of King Arthur and his noble knights have been lost to the status quo, conventional wisdom, logo and instant gratification by the acquisition of empty material objects.

Have a nice day :)

Discovery Of Life

Discovery of life


Gentlemen! Today is the first time that I realize the presence of life! Gentlemen! I beg you to leave me alone for a moment, so I can savor this formidable, spontaneous and recent life emotion, which today, for the first time, enraptures me and makes me happy to the point of tears.

My joy come from what is unexperienced of my emotion. My exultation comes from the fact that before I did not feel the presence of life. I have never felt it. If anyone says that I have felt it he is lying. He is lying and his lie hurts me to such a degree that it would make me miserable. My joy comes from my faith in this personal discovery of life, and no one can go against this faith. IF anyone would try, his tongue would fall out, his bones would fall out and he would risk picking up others, not his own, to keep himself standing before my eyes.

Never, except now, has life existed. Never, except now, have people walked by. Never, except now, have there been houses and avenues, air and horizons. If my friend Peyriet came over right now, I would tell him that I do not know him and that we must begin anew.
When, in fact, have I met my friend Peyriet? Today would be the first time we became acquainted. I would tell him to go away and come back and drop in on me, as if he did not know me, that is, for the first time.

Now I do not know anyone or anything. I notice I am in a strange country where everything acquires a Nativity relief, a light of unfading epiphany. No, sir. Do not speak to that gentleman. You do not know him and such unexpected chatter would surprise him. Do not put your foot on that tiny stone: who knows it is not a stone and you will plunge into empty space. Be cautious, for we are in a totally unknown world.
What a short time I have lived! My birth is so recent, there is no unit of measure to count my age. I have just been born! I have not even lived yet! Gentlemen: I am so tiny, the day hardly fits inside me.

Never, except now, did I hear the racket of the carts, that carry stone for a great construction on boulevard Haussmann. Never, except now, did I advance parallel to the spring, saying to it: 'If death had been something else....' Never, except now, did I see the golden light of the sun on the cupolas of Sacre-Coeur. Never, except now, did a child approach me and look at me deeply with his mouth. Never, except now, did I know a door existed, and another door and the cordial song of the distances.
Let me alone! LIfe has now struck me in all my death.

---Cesar Vallejo

Weak Type 1 Or Just Incompetent Doctoring Again and Again

This story below showed up on my google alert. My heart and prayers go out to the parents. Judging by the article it sounds like another case of bad doctoring as the article does not mention the doctors giving the parents any choices i.e The NIV PRotocol of Dr. Bach, Tracheostomy etc. Most of the time kids die untimely deaths because of misinformed, conventional Dr.'s that can't get past their own egos of not knowing what to do. Unfortunately because these doctors do not have the will to just get on the computer and look at the www.fsma.org or www.smasupport.com site and look at the links page and contact doctors with lots of direct experience caring for SMA Children in the U.S. the kids die untimely deaths because the doctors are plainly "Egotistical Jackasses." I have to add that i HOPE the doctors did give this family choices but I highly doubt it.

Baby's death: parents want to advise others
17 August 2008, 13:43
Click Here
By Noelene Barbeau

A young Durban couple's new- born son died recently from spinal muscular atrophy, a motor neuron disease.

In his memory, they want to create more awareness of this disease and help fundraise for expensive equipment that many families cannot afford to buy their children.

Spinal muscular atrophy (SMA) affects the voluntary muscles used for activities such as crawling, walking, head and neck control and swallowing.

Lavon Chetty was just 56 days old when he died. His parents, Dean and Terene Chetty, of Parlock, were thrilled to welcome him into the world on June 1.

However, a week later, after a series of tests, they learnt he had SMA type zero, a new classification of the disease and apparently the worst. At present, there is no cure for SMA.

'The day we found out, we came home and started doing some research on the Internet. We had never heard of such a disease and the internet just listed three types of SMA.

'SMA zero is when a baby has the disease from birth. At first Lavon could move his fingers, hands and legs, but slowly this stopped. From the time he was born he couldn't breathe without the ventilator. He also had to have a drip and a tube placed through his nose that went to his stomach,' said the grieving dad.

'He was a very alert child. He would smile when we spoke to him and would frown or cry if something was hurting, but his eyes told you his story. We had a short time with him, but we formed a close bond. The nurses were also very fond of him. They really went the extra mile for Lavon,' said Terene.

They were regulars at the neonatal ICU ward at St Augustine's Hospital and had a team of doctors to help. Forming part of the team was Prof John Rodda, a paediatrics neurologist from Johannesburg.

He said SMA affected children across all race groups and was the most common neuromuscular disorder in children.

'Regarding testing for SMA, it won't be detected in women who are pregnant for the first time, unless there's a family history of SMA,' he said.

'Antenatal testing can be done if the couple suspect their unborn child could have SMA.

'A child's blood can also be tested if his or her parents think he or she might have it.'

Terene was not tested for SMA while she was pregnant with Lavon because neither Dean nor Terene's family had a history of SMA.

But knowing what she does now about SMA, Terene feels every pregnant woman should be tested for it at their first eight-week check-up and from there make an informed decision if SMA is detected.

The couple said they had known a few days before Lavon's death that he was going to die.

'We had to plan a funeral for him before he died. That was the hardest part,' said Dean.

The Chettys searched the internet for a local website that could help them speak to parents who had been in a similar situation.

They found the Leah Reilly Foundation and met Cara Reilly, whose daughter Leah died a year ago when she was 19 months old. Leah was diagnosed with SMA type 1.

The Reillys also found a lack of support in South Africa, which led to Reilly establishing the foundation.

Reilly said local statistics were not available and she was aware of only eight South African cases.

At a recent fundraiser, University of Witswatersrand lecturer Diane Manning said she would include SMA studies in the medical syllabus from 2009.

Yay Lizzy. We are so proud of you, your mom, grandma and grandpa!!

Elizabeth is beating the odds

By Peg Reynolds, Staff Reporter
Published: Friday, August 15, 2008 1:28 PM CDT
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Pontiac Fire Department will “Fill the Boot” again this weekend to help Jerry’s Kids who are afflicted with muscular dystrophy. The firemen will be accepting donations between 10 a.m. and 1 p.m. Saturday at Pontiac Wal-Mart and Sunday at Big R. With the firemen is Elizabeth Hallam, of Pontiac, the Goodwill Ambassador for the MDA for Central Illinois. She suffers from spinal muscular atrophy type 1. Firemen from left are Scott Runyon, Todd Gould, Andy Vitzthum and Jace Weaver. (Photo provided)

There is a 4 1/2-year-old Pontiac girl who is surpassing a doctor’s prognosis of not celebrating her second birthday.

Elizabeth Lee Hallam, born Sept. 29, 2003, was diagnosed with SMA (spinal muscular atrophy) type 1 on May 11, 2004. Her parents, Christen Huette and Brandon Hallam, learned that this was the number one genetic killer of children under the age of two.

SMA is a group of inherited and sometimes fatal diseases that destroys the nerves controlling voluntary movement. This affects crawling, walking, head and neck control and even swallowing.

Two months after Elizabeth was diagnosed, she was placed in a clinical study at Stanford, Calif. The study is funded by MDA, but the cost of the trip, their lodging and Elizabeth’s medication, which costs between $200 and $300 a month, are not. The mother and daughter must travel to the California hospital every four months for follow-ups.

“It’s hard to get the money, but we do it for Lizzy,” Huette said.

They discovered early in the study that Elizabeth was not on a placebo, but was taking the medication hydrozyurea, which was developed by Dr. Ching Wang.

“Her movement increased after taking the medication for two weeks,” said her mother. “When she was first diagnosed, she didn’t move the bottom part of her body at all. She was moving her legs, starting to bend her legs while laying flat on the floor, and she looked like she had more energy.”

Elizabeth started to lose her ability to swallow after a case of strep throat soon after their first trip to Stanford.

“She got really ill and would gag when eating or refused to eat at all. Our doctor's nurse told me, ‘There is nothing more doctor can do for Elizabeth.’ Their opinions have since changed because of how well Elizabeth has been doing for the past three years.”

A nissen/g-tube saved Elizabeth's life, her mother said. A swallow study had showed Elizabeth was silently aspirating on liquids.

Elizabeth requires around-the-clock care, which is shared between family members. She has physical therapy once a week

Huette said she owns a van, but it does not have a wheelchair lift. A ramp was built at their Pontiac home by RAMP. She is inquiring into a home school video conferencing live feed, which is funded by a foundation. Her daughter can not mix daily with other school-age children, as a simple illness would land Elizabeth in the hospital for two weeks, or worse.

Huette said her parents, Herb and Jeanne Huette, have helped her and Elizabeth through their trials, as have the other members of the family.

Huette also praises the efforts of Senator Barack Obama and State Sen. Dan Rutherford, R-Chenoa, who have both come to her rescue when she battles “red tape.” “I have them both on speed-dial,” she said.

The Pontiac Fire Department is another group that is helping Elizabeth fight her battle. They will conduct their second and third “Fill the Boot Drive” this weekend. On Saturday they will be at Wal-Mart from 10 a.m. to 1 p.m. Sunday’s collections will be at Big R from 10 a.m. to 1 p.m. Monetary donations collected for the MDA drive will stay in this area, a press release said.

A Wonderful Playdate

This weekend Shira had a very special treat. While Sammy has had several play dates at home Shira had a special visit by 2 new friends Tete and Helena and their mother Marie. Shira had so much fun!! Because we keep Shira away from sick people, exposure to crowds in enclosed places etc. it limits the kinds of things Shira can do as well as her contact with others. But the day was special and Shira had the best time and the girls were so attentive to Shira. The girls spent alot of time playing beside Shira so Shira could watch and take part in everything they were doing. We look forward to our next play date. Shira had so much fun she cried when the play date was finished. We are so happy for Shira that she has found some new friends.