What is Septo-Optic Dysplasia? Septo-optic dysplasia (SOD) is a rare disorder characterized by abnormal development of the optic disk, pituitary deficiencies, and often agenesis (absence) of the septum pellucidum (the part of the brain that separates the anterior horns or the lateral ventricles of the brain). Symptoms may include blindness in one or both eyes, pupil dilation in response to light, nystagmus (a rapid, involuntary to-and-fro movement of the eyes), inward and outward deviation of the eyes, hypotonia (low muscle tone), and hormonal problems. Seizures may also occur. In a few cases, jaundice (prolonged yellow skin discoloration) may occur at birth. Intellectual problems vary in severity among individuals. While some children with SOD have normal intelligence, others have learning disabilities and mental retardation. Most, however, are developmentally delayed due to vision impairment or neurological problems.
Is there any treatment?
Treatment for SOD is symptomatic. Hormone deficiencies may be treated with hormone replacement therapy. The optical problems associated with SOD are generally not treatable. Vision, physical, and occupational therapies may be required.
What is the prognosis?
The prognosis for individuals with SOD varies according to the presence and severity of symptoms.
What research is being done?
The NINDS supports and conducts neurogenetic research which focuses on identifying and studying the genes involved in normal brain development. The knowledge gained from these fundamental studies provides the foundation for understanding how this process can go awry and, thus, may eventually give clues to understanding disorders such as SOD.
Stem Cells
Stem cells have the remarkable potential to develop into many different cell types. Working as a sort of repair system for the body, they can theoretically divide without limit to replenish other cells, at the sole condition that the receiving person is alive. When a stem cell divides, each new cell has the potential to either remain a stem cell or become another type of cell with a more specialized function, such as a muscle cell, a red blood cell, or a brain cell.
Stem Cells Preparation
Umbilical cord blood from healthy full term newborns with healthy mothers is the only source of Beike’s stem cells.
Given the woman’s consents to donate her umbilical cord, immediately after the delivery authorized hospital personnel insert a needle into the cord’s vein and the blood is drawn, normally from 80 to 140 ml - approximately 2 thimbles. The cord blood is then put into a small, sterile pouch with an anticoagulant to prevent clotting. The pouch contains from 100,000 to 300,000 stem cells.
The umbilical cord blood is then immediately sent to the city government blood bank for testing. First of all, a medical history of the mother is reviewed. Then, the blood is tested to insure that no genetic disorders, microbiological contamination and/or hereditary diseases exist, such as HIV, Syphilis, CMV, HTLV and Hepatitis. Provided the blood passes all tests, it receives a certification of purity and is then transferred to Beike laboratory.
Here, the blood is tested one more time to confirm the blood banks results. This double check ensures total safety to our patients. After the blood has been cleared it undergoes a process known as Magnetic Washing, aimed at removing all material except the specifically desired stem cells by means of magnetic beads coated with antibodies to stem cell antigens.
When this immunomagnetic separation is done, stem cells are then cultured in a solution containing nutrients and growth factors, but no animal products or by-products: this medium is changed every 1 or 2 days. The cells proliferate for 7 to 10 days under continuous control: if there is any sign of unwanted behaviour or contamination, the entire batch is immediately destroyed.
The cells are harvested at the optimum point, i.e. before they start differentiating into specialized cells. At this phase, they normally count from 7 to 10 million. The cells pass through another washing process to remove all growth medium and particles, and we have finally obtained extremely pure stem cells ready for transfusion. If they are not to be used immediately, they are frozen in liquid nitrogen.
Stem cells from umbilical cord blood have the advantage of a “"naïve"” immune status: in other words, they won't attack the recipient person. In case a rejection were to occur anyway, there are treatments to handle it.
In front of a GVHD (Graft Versus Host Disease: a potentially fatal rejection case) the patient undergoes an immunosuppressive therapy, but we must point out that GVHD has never been an issue with the type of cells (umbilical) we are discussing.
The most common and frequent issue is a slight histamine response within the body which can elevate the patient's temperature: a situation that is quickly and easily handled. The range of treatment options for this issue varies from mild anti-inflammatory drugs such as Tylenol to stronger histamine suppressants such as Bynadryl. As far as the risk of death is concerned, there has never been a single case reported.
Since 2001 Beike has treated hundreds of patients with umbilical cord stem cells. During the first years we used adult neural stem cells and fetal stem cells too, but eventually Beike has found that umbilical cord stem cells are the most effective, safe and tested - and decided to focus on them only.
Upon arrival at the hospital you will undergo a Standard Test.
Anyway, we are fully aware that for some of our patients such a long trip could be an ordeal: if this is your case just tell us and you'll have a full day (or two) to rest and get settled in, before passing the Standard Test.
This Test is very important: we have to check your health and all the details of your condition. It usually includes blood, urine, stool, blood pressure, mobility, an ultrasound, an EMG and a breath test. You also will undergo a Magnetic Resonance or CT scan if appropriate and if you do not already have a recent one.
When the Standard Test is over and all the results are available, you will rest for a couple of days, and after that you will receive your first stem cells transplant.
Important: the stem cells can be injected in two ways.
- Direct injection into the spinal fluid
- IV (intravenous) in your hand.
Beike's doctors will give you their own opinion and advice above the method that should be followed, but if you are not comfortable with the idea of a needle into your spinal cord you have the possibility to ask for simple IV's.
In case you accepted the idea of receiving direct injections, please don't worry: the procedure is obviously done under local anesthesia. The only "pain" you'll feel will last from 15 to 30 seconds and is due to the anesthetic liquid itself, before it acts. Immediately after, the needle enters to drain out some spinal fluid, that will then be replaced by stem cells. Usually done around 3:30 p.m., the process takes 30 minutes or so. You will receive nerve growth factors, too: they boost and stimulate the growth of the stem cells.
Whatever the kind of treatment chosen (injection into the spinal fluid or IV), it will be repeated at every 4 to 5 days up to a total of 4 times until the course is over. The entire cure takes from 20 to 25 days.
Depending on the disease, after the first injection you may (or may not) feel some changes. When the treatment is over, a final series of tests will be done. You'll be given a copy of the results to take home with you. You will be interviewed at the end of your stay to gauge the improvement.
Important: arehabilitation therapyis integral to our stem cells treatment. The exercises and programs are customized for each individual patient. The rehabilitation normally takes from 2 to 4 hours, 4 to 6 days per week, depending on the patient’s conditions and ability to participate. (Sunday’s off).
Beike Europe’s will is to avoid your disappointment and avert any possible future complaint: hence, before going to China both patient and his or her caretakers should learn by heart a basic concept of paramount importance, i.e.
the hospitals’ habits in China are very different from ours.
In Europe we are prone to take for granted a lot of things that down there (let’s say in nearly all Asia) are not. The reason is easy to understand: while european hospitals take an overall care of the patient (i.e. from medical aspects to more mundane necessities of the hospitalization period), the chinese hospitals only provide the sheer medical assistance: of course the patient is given a room, but nothing more.
A very easy way to fully grab the important consequences deriving from such a difference is to play yourself this sort of mental trick:
Please consider yours not as the classical "hospitalization", but rather as "a period, aimed at a clinical treatment, spent in a mini-apartment attached to an hospital".
This is not absurd nor difficult: if you will be able to merge yourself into such a point of view, you'll consequently and with no effort understand that yes, the hospital will cure you - but it will be up to you and your caregivers to take care of the other practical necessities, from food downwards.
Let's make some examples:
--- Each and every patient has to provide for towels, personal hygiene products, etc. - in a word, all that is needed for bathroom.
--- Same situation for the food. In Europe it is either served in your room or -provided your physical conditions allow you to do so- you can eat at the hospital’s refectory. In any case, food is considered as integral to the standard service provided by whatsoever hospital. In China things go in a different way, and it’s up to the patient and his caretakers to think about it. The food has to be bought outside.
--- Here in Europe we are accustomed to see in our hospitals a member of the staff that -depending on the local language- is either called Nurse’s Aid, Cure Assistant or something similar. In any case, we are talking about a person who takes a very close care of the patient, helping him out in all possible ways: bathroom, hygiene, getting up from the bed, etc. Mind you, chinese hospital usages simply do not foresee such a role. Useless to say, there are very professional Nurses, but they strictly perform their proper role as paramedics. They give medications, do injections and so on: in a word, whatever implies a certain degree of medical skill, but do not expect them to do more than this. As a consequence, the chores of the “typical european Cure Assistant” entirely fall on patient’s family members, relatives or caretakers. No exception to this rule is made for the westerners.
--- Chinese hospitals haven’t got their own inner laundry service. It goes without saying that it is surely possible to have such a service anyway, but your dirty laundry will be collected by the personnel of a reliable city laundry: as a consequence, this will cost you something.
We could go on with more similar examples, but we think this should be enough: we’re pretty sure you understood the way things go. We are aware that this is simply unthinkable in Europe, but in China it’s absolutely normal: should you complain about this situation with some member of the hospital staff, that person won’t simply understand what are you complaining about, that’s it.
Mind you, this has got nothing to do with the quality of the medical care that you will receive, nor with the absolute cleanliness of the place: the Zhejiang Xiaoshan hospital is a modern structure with state-of-the-art equipments and procedures, and it has been highly praised by whoever has been treated there. Nevertheless, dear patient, from a service point of view you should please never, ever forget that
you must not look forward for an european standard, you better cope with local one.
Given this, two important issues:
1 – Please bring with you a certain amount of extra money in cash, in order to pay for all the extras. The bright side of this situation is that the cost of life in China is extremely low in comparison with Europe’s, hence you won’t spend that much (see Extra Costs) : the amount of extra cash money we recommend is normally sufficient. It goes without saying that if you’re going to eat every day in fancy downtown restaurants, buy a lot souvenirs, in a word if you will allow yourself the best, well - you’d better bring a larger amount of money with you.
2 – Just a few members (namely, some of the doctors) of the hospital staff are truly proficient in English. No one there speaks German, French, Portuguese, Flemish etc. Let’s assume now that your native language is not English or that you can’t speak it anyway: then please be sure that at least one of your caregivers does, lest you want to feel stranded in China with no chance of communicating with the persons who are treating you.
If neither patient nor caregivers speak English, we regret to inform you that no Translation Service is currently provided by Beike Europe. To do so, we must find out professional and reliable translators in China, and it’s no easy task. Anyway, when we will be finally able to find out the right persons, their work will be one more extra issue at your own cost.
Cost
Basic treatment program
24.000 (twenty-four thousand) From 20 to 25 days / between 40 and 60 million cells
The price includes:
the stay in the hospital for you and your caregiver
four injections of umbilical cord stem cells with each injection containing between 10 and 15 million cells. Injections are given by IV and/or into the spinal fluid
a 6 days per week rehabilitation therapy
initial check-up and round-the-clock medical assistance
transportation to and from the airport
We have a special package price for a six injections program at 32.000(thirty-two thousand), that must be arranged at the time of your booking. This will require additional time to be spent in the hospital, possibly a full four weeks.
Spinal cord injury treatment program
28.000 (twenty-eight thousand) From 20 to 25 days There are two types of treatments for spinal patients. One program involves surgery with direct stem cell application plus three stem cell injections. The other program does not include surgery and involves five or six stem cell injections. Injections are given by IV and/or into the spinal fluid.
Which treatment program a patient receives will be evaluated by Beike’s Lead Medical Consultant in conjunction with the client’s personal medical consultant.Mind you, should the "surgery + injections" procedure be chosen, the patient will be automatically assigned to 463 Hospital in Shenyang, and his hospitalization will last 30 days. If after the initial check-up the treating physicians should decide that such a procedure is better avoided, the patient will receive a six injections treatment.
Both options have the same price, including:
the stay in the hospital for you and your caregiver
three (or five, depending on the program chosen) injections of umbilical cord stem cells with each injection containing between 10 and 15 million cells. Injections are given by IV and/or into the spinal fluid
a 6 days per week rehabilitation therapy
initial check-up and round-the-clock medical assistance
transportation to and from the airport
Facultative extra costs
- Additional injections, to be booked at least one month prior to treatment on a case by case basis depending on room availability, cost 4.500 (four thousand five hundred) each. Each injection may require an additional 2-5 days in the hospital. This option is only available to patients already participating in a full treatment program.
- If you opt for additional injections outside of the above parameters and/or during your hospital stay, they will cost 5.000 (five thousand) each. This may require an additional time in the hospital and/or that you stay in a nearby hotel, which will be at your own cost. This option is only available to patients already participating in a full treatment program. - In case the patient wishes, it's possible to boost the injections' action by means of an Optional Bone Marrow Surgery, whose extra cost is 4.800 (four thousand eight hundred) . This optional surgery is only available at 463 Hospital in Shenyang. This surgery is not suitable for children, and only available to those patients already undergoing a full treatment program.
- If for some reason you opt to extend your stay in the hospital, you will be charged an additional 200 (two hundred) € (Euros) per day for hospital fees.
- Transportation to and from the airport is normally done by van and it’s included in the fee. Should the patient’s conditions require it, an Ambulance is available: you are kindly requested to book this service in advance. Please mind that such transportation implies an extra cost of 600 (six hundred) per trip (one way), i.e. a complete service (Ambulance on both arrival and departure) will cost you 1.200 (one thousand two hundred).
- Finally: if during your hospital stay you should become ill and/or require medical treatment as a result of something other than an issue related to the stem cells treatment, you will be responsible for the payment to the hospital for the necessary additional care.
Very important, please note
The treatment is provided by the hospital under its own responsibility
Upon reservation confirmation (i.e. when you will be told the dates of your treatment period) you are required to pay 20% of the amount. The remaining 80% has to be paid at least one month prior to your departure. Should you fail to do so, your reservation will be cancelled.
Should you decide to cancel your reservation for whatsoever reason, the prepaid 20% will be retained as a waiver for administrative expenses.
The above mentioned prices are valid from January 10th 2008.
Prices are reviewed on a quarterly basis and are therefore subject to change.
The program time frames and the minimum number of injections are firm and not negotiable.
The above mentioned prices are valid for all patients living within the limits of Beike Europe's area, with no exceptions. Should you notice some differences between our prices and those applied in other geographic areas, this is due to specific local agreements signed by Shenzen Beike Biotechnologies, Co. Ltd.
n order to pay for whatever is not included in the prepaid hospital fee (i.e. buying food, laundry service, drinks, snacks, city restaurants, sightseeing, taxi, etc.) bring at least 1000 (one thousand) € (Euro) in cash. This amount should be more than sufficient to cover the needs of two people for a period of one month.
No foreign currency is directly accepted in China, hence you'll pay all the little extras in local currency, namely Yuan. Actually, the official name for chinese currency would be Ren Min Bi (meaning "People's Money", shortened in RMB) but everybody, especially on streets and shops, calls it Yuan or even Kwhy.
Don't worry anyway, you will not need to spend any money upon arrival: take yor time, settle in, and the day after we will take you to the bank to change your euros. The exchange rate is about 10 yuan for 1 euro. 100€ correspond to 1000RMB.
Don't count too much on your credit cards while here, since international credit cards in China are only welcome at top class restaurants and big shopping centers. Bring them with you anyway, since at many banks you most likely will also be able to withdraw chinese money upon presentation ofinternational cards like Visa and Mastercard.
Forget your Travellers Checks, they are difficult to use in China.
United States, 5 and a half year
Ryleas was diagnosed with Optic Nerve Hypoplasia, an abnormal deficiency of cells: in her case ONH was extremely severe, resulting in her complete loss of vision. Such a condition is normally linked with hormonal imbalances in the brain which can affect a child's growth, although in Rylea’s case Optic Nerve Hypoplasia does not seem to have affected her in being a very lively and happy child. Sight apart, in all other respects Rylea is healthy and energetic.
Through stem cell treatment her family hoped to restore the cell count in the nerves and to see some response to visual stimulus, specifically pupil dilation or retraction. Rylea’s treatment (umbilical cord stem cell injections with visual rehabilitation therapy) began on July 3rd, 2007.
Before the treatment
In affecting her optic nerves, Rylea's illness has entirely deprived her of light perception and vision: in a word, she was blind. In early tests of shape recognition (slotting shapes through appropriate holes), Rylea relied on touch and memory, and did not attempt to identify shapes through sight..
After the treatment
Rylea showed important signs of light sensitivity less than two weeks after the treatments began. In a darkened room Rylea responded to a flashlight when shone in her eyes. Rylea's mother initially hoped to be seeing improvement over a period of up to six months: in this respect the treatment far exceeded her expectations.
Rylea's Progress Update
The following is an excerpt from Rylea's blog (www.nomoredarkness.com). It covers her progress shortly after her return to America.
- 8 August 2007 “We met Dr. Brothers (Rylea's eye doctor) this morning. It was exciting for him to see her and respond to the light as it had been for us. He examined her eyes and Rylea showed him how she could tell which eye he was shining the light into. Then he turned the lights down low and took her in front of the wall where the eye chart shines. He asked her if she could see that light, and she pointed to it. Then he asked her if she could see the picture of the "E”... she said yes and was even able to point to the 3 ends of the "E". Watching this was very emotional for both Dr. Brothers and myself since it was by far more than either of us had expected to see as a result of the stem cell transplants”
- 12 August 2007
“Rylea asked me to go get the pen light this morning...so of course I did... we shined it in her eyes and she was able to grab the light. Then I told her that I wanted to show her something then I wanted her to tell me what she saw...so I held my breath so she couldn't feel me breathing on her. I asked her what she saw and she said, "I SAW MY MOMMY!!!" - So I asked her what I looked like and she said, "Mommy, you are beautiful!!!" She was able to identify everyone in the room immediately. What a miracle, what an absolute answer to many, many prayers!”
adio
About Me
I was born in April 2006 with a rare brain condition called Septo-Optic Dysplasia. In the first year of my life i spent 8 months in hospital with various illnesses and problems all relating to to my condition. Septo-Optic Dysplasia causes various problems for me, including pituitary deficiences, hormone deficiences, low muscle tone, seizures, and also I am blind. I have to have hormone replacement everyday to help me grow, and i am on medication everyday, including steroids and growth hormone injections. I also have various other health issues, all related to my condition, and need to attend hospital for regular blood tests, just to make sure that the levels of my medication are correct otherwise i would be very ill again. I have open access to the childrens ward in my local hospital, which is good because i spend a lot of time there due to being prone to infections and illness.
What i hope to do.
After coming home from China in March my sight has went from light perception only to seeing at a distance of six feet. I am hoping to go back one last time, as the doctors feel i would benefit even more from another round of treatment.
New pics added to the photo album