A friend of mine on Care2 sent me a message about one of her friends on Care2 that is living in Bulgaria. Her name is Elitsa Kostadinova Borisova, she has Spinal Muscular Atrophy - SMA Type 2 is also called intermediate spinal muscular atrophy. She is 28 years old, a year older than my daughter.
This is the message she sent my friend:
Hi my precious friends! I am writing you this card to tell you 'I love you and Good Bye for ever" because I am dying. As a SMA patient my condition rapidly got worse and my lung muscles do not have any power to work and my whole body system breaks down.The only one chance for me to stay alive and recover is a stem cell treatment in China which costs $30 000 but I do not have this money so I am waiting for my end. That's why I want to tell you that it was a great pleasure to know you and take part in this fantastic community! Good Bye my sweet sweet friends! I love you!!!
SMA type 2, also called Intermediate SMA, is the most common type of SMA. It allows for a longer lifespan than SMA Type 1, but a shorter-than-normal lifespan overall. Lifespan may go until the 20s or 30s. Respiratory infection is the most common cause of death in type 2. SMA type 2 begins either between 6 and 18 months or after the child has demonstrated she or he can sit without support (after being placed in a sitting position). Symptoms of type 2 include deformity, motor delay, enlarged calf muscles and tremors in the fingers. Proximal muscles that lie closest to the spine are affected with weakness first; the legs will become weak before the arms. Children with type 2 SMA will never be able to walk without assistance. The good news is that the child with SMA will most likely be able to perform tasks with their arms and hands, such as keyboarding, feeding, etc. It has been observed that children with SMA type 2 are very intelligent. Physical therapy, assistive devices and power wheelchairs can go a long way toward contributing to a meaningful life for children with SMA type 2.
Here is my life story:
I am 28 and when I was a child, I was diagnosed as a SMA Type 2 patient (a disease which weakens your muscles so fast and fatally that you are not able to walk and move alone at all). Since then, every minute of my life is a terrible fight to achieve my aims and prove my skills in the ‘tolerant’ Bulgarian society. Despite being treated as a rubbish all the time, I managed to become an English tutor thanks to my parents who could hardly make the both ends to pay for my education because none of the teachers wanted to visit me at home free of charge. Since 2003 I have been teaching English at home and I became so good at this action that I did not have enough vacancies for all the pupils who needed my lessons. In the course of my work I made lots of friends and I gradually put up with my hopeless condition. But in June 2008 my life changed totally when I heard that my disease is possible to be treated by stem cell transplants in Beike Hospital, China and the chance for me to be recovered is 70 – 80%. Unfortunately the treatment cost $30 000 for 7 stem cell injections (the maximum amount suitable for destroying SMA) and continues 25 – 35 days. The same kind of treatment is offered by the Repair Stem Cell Institute http://www.repairstemcells.org/Home.aspx with the cost of $10 000 - $24 000 and after consulting it, I was defined as suitable for it. When my ‘friends’ and pupils heard about that they were missing without a trace being afraid of being asked for a possible financial support for me – they changed their phone numbers and deleted me from their Skype list as if we had never known each other. Only my parents and my 17 year old brother stand by me and fight every day to raise the money I need in spite of our relatives who left us considering our aim as doomed. After my father’s ask for a loan was rejected by all the banks, businessmen and even his employer with the argument that our monthly family income is too low to pay the loan off ( my dad’s salary as a high-skilled electrician is $350, my mum is unemployed because she looks after me permanently without having any financial support by our country for that and my disability pension is only $60) there were two variants in front of us – to sell our small flat or a new job for my dad abroad. We chose the second variant and since August 23, 2008 my dad and brother have been living in Dublin, Ireland (the country with one of the highest living standards in Europe called the new ‘economic tiger’) After lots of difficulties my father managed to find a well paid job in a small building company and he saved the first 2 000 euro for me but the world crisis froze the building process there and he lost his job … Then the situation got worse because Ireland used series of repressive obstacles against my dad and brother who is the most excellent student in Rossmini High School there. That country refused them any children allowance, dole (unemployment benefit) and rent allowance with the argument that my dad does not have social insurance and Work Permit (a document which gives the Bulgarian and Rumanian people rights to work legally in Ireland). My father applied for a Work Permit but the authorities did not give him one because they said that Ireland did not need new immigrants especially Bulgarians in this world crisis … And without having this document my dad and brother do not have any rights for financial support there and now they are starving and wondering how to survive … But apart from these obstacles that we believe are caused mostly by the world crisis, we like Ireland very much and the aim of our family is to settle there forever after the end of my possible treatment because this country can offer us a calm way of life, good climate, big opportunities for education for my brother and of course a perfect medical care for all of us … Corruption, crimes and poverty are not the image of Ireland as they are shown in Bulgaria and therefore we plan to live there together. Above all we believe that my dad will succeed in raising the sum I need but because of my permanent lung infections that are characteristic for all the people with SMA, my organism weakens every minute and if I do not speed my departure to China I may be too weak to endure this treatment (I am 160 cm. tall and 35 kg. weigh) and thus missing my last chance to walk. Therefore I would like kindly to ask you to help me visit whatever of the both hospitals described above giving us a financial support … If you help me, my whole family will do our best to contribute to your organization by all financial and other means till the end of our life because we are honest and hard working people who always keep their promise given.
Thank you in advance and wish you all the best!
Elitsa Borisova
Here is her medical information:
Medical History and Current Treatment
Disease / Injury History:
[This should be a very detailed statement of the patient’s medical history and include Primary Diagnosis information]
ELECTROMYOGRAPHY TEST NUMBER 198
ELECTROMYOGRAPHY
CONSULTING
ROOM
TEL. +359(2)4344-525/395
MUSCLES AT REST AP VOLUNTARY AP
FIB. SHARP+ WAVES DURATION OF AMPLITUDE FORM DATA
m/sec. mV
M. ABD. DIG. V. SIN. 10-12-15, THREE-PHASE, POSITIVE
M. ABD. POLL. BR. SIN.
M. DELTOIDEUS
M. GASTROCNEMIUS
M. EXT. DIG. BR. SIN.
M. ABD. HALL. DEX.
M. TIB. ANT. SIN. SINGLE, AP
M. BICEPS. BR. SIN 15-20, POLYPHASE,A SINGLE
M. QUADRICEPS. FEM. SIN GROUP, AP 4, REINERVATION,
STRANGE
FLOW RATE ON THE MOTOR FIBRES AND DISTAL LATENCIES
NERVES FLOW RATE DLF M-ANSWER F-WAVE
m/sec m/ sec mV ms uV
STANDARD STANDARD
N. ULNARIS SIN. 65 46-60 4 2, 5 – 4, 0
N. RADIALIS SIN.
N. MEDIANUS SIN. 75 46-59 4. 2 3, 0 – 4, 5
N. AXILLARIS SIN. 4. 0 – 5. 0
N. FIBULARIS SIN. 43-66 7, 0
N. FIBULARIS DEX.
N. TIBIALIS DEX. 41-60 7, 3
N. TIBIALIS SIN.
SENSE PERCEPTION LATENCY (m/sec) SNAP (uV)
N. ULNARIS SIN. 2. 7 102
N. MEDIANUS SIN. 3 28. 3
N. SURALIS SIN.
CONCLUSION: M. QUADRICEPS. FEM. SIN SHOWS “STRANGE” BURSTING WHEN IT IS AT REST. THE SHOULDER GIRDLE MUSCLES HAVE SINGLE REINERVATION AMPLITUDE AND SINGLE ACTION POTENTIALS WITH A LONG DURATION AND HIGH REINERVATION AMPLITUDES (A TYPICAL NEUROGENE RECORD). WHEN N. FIBULARIS. SIN IS STIMULATED, THERE IS NOT M-ANSWER GIVEN BY M. EXTENSOR. DIG. BR. SIN AND M. TIBIALIS. ANT. SIN. THE FLOW RATE ON N. ULNARIS SIN AND N. MEDIANUS SIN AND THE MOTOR AND SENSUAL FIBRES, IS STANDARD.
ELECTROMYOGRAPHY TEST SHOWS A FRONT HORN DAMAGE / CLINICAL DEFINITION OF SPINAL MUSCULAR ATROPHY TYPE 2.
DR. B. ISHPEKOVA
Signature:
UNIVERSITY HOSPITAL
BIALO MORE 8 STR., SOFIA, BULGARIA
Past Surgeries and / or Rehabilitation Treatments:
[Include type of treatment received, date of the treatment and overall outcome]
There are not any
Current Symptoms:
[Include the patient’s current condition and physical problems he or she is experiencing]
Can sit without support but can not walk at all.
Current Medications:
[Include Name, Dosage and Reason for using]
No medicines/drugs are taken
Does the patient have any metal plates / rods?
[If yes, please describe along with the location]
[If yes, please bring copies of the most current MRI/CT films for review. These can be the actual films or an electronic copy]
No, she does not
Does the patient have any allergies to medications and / or other substances?
[If yes, please explain and provide details about the symptoms and allergic responses affecting the patient]
No, she does not
Does the patient have any communicable illnesses such as HIV, Hepatitis, TB, Herpes and sexually transmitted diseases?
[If yes, please explain and provide details about the illness history]
No, she does not
Is there or has there ever been a presence of malignant or benign tumors and / or cancer in the patient?
[If yes, please describe in detail]
No, there is not and there have not been any of these
Does the patient have a pacemaker?
[If yes, please explain why and what type]
No, she does not
Does the patient have a continuous medication pump?
[If yes, please explain why and what type]
No, she does not
Does the patient have a feeding tube?
[If yes, please describe the type of tube and type of pump used, and if it is used for feeding and/or medications]
Note: Not all pumps are compatible with electrical currents in China. Plan to bring adapters for all pump supplies. Please also bring additional supplies for gravity feeding in the even the pump fails.
No, she does not
Is the patient on a ventilator? No, she is not
Does the patient have a tracheotomy? No, she does not
Does the patient require suctioning? No, she does not
Does the patient currently have any bed sores? No, she does not
[If so, please describe in detail] Is the patient a returning client?
[If yes, please detail all past stays including hospital location, dates, number of injections and price you paid]
No, she is not
Has the patient ever received cells from another treatment company?
No, she is not
What are the patient’s hopes for this treatment? I hope that I will be able to walk without any support
How did the patient find out about this treatment?
[Please be specific in your explanation]
I saw some clips in UTUBE
Thank you for your interest in stem cell treatment. We will have a response in 48 to 72 hours.
If you think that I lie you, you can contact this hospital and ask them if I have contacted them for a possible treatment. They told me that I was suitable for such kind of treatment. And here is the Chinese hospital detailed information for the real good stem cell cell treatment rezults and treatment prize:On this information sheet below you will find information about our patient experiences of those who also have Spinal Muscular Atrophy and have sought treatment, and detailed information about our treatment plans and prices. We understand it is important for you to have as much information as you can to make an informed decision. Please do not hesitate to contact me at matthewbeikebiotech@gmail.com with any further questions you have as well as to register for treatment.
Sincerely,
Matthew Ungar
Possible Improvements
When discussing improvements, it is important to remember that improvements might greatly differ from one person to another. Improvement cannot be guaranteed. That being said, most Spinal Muscular Atrophy patients show visible signs of improvement. Spinal Muscular Atrophy patients, utilizing the combination of stem cell therapy and rehabilitation, have gained improvements in the strengthening of back muscles, strength and movement of legs and arms, bladder control and hand movements.
Patient Experiences
Perhaps the greatest tool at your disposal for deciding if stem cell therapy is right for you comes from reviewing other SMA patients’ experiences. You will be able to not only view the many improvements they displayed, but also review their experiences coming to China and thoughts about if coming for treatment was the right choice. For not only these patient experiences and blogs, but those of other patients with SMA who were treated by Beike, visit www.stemcellschina.com. Most patient experiences are also accompanied by videos of their treatment and progress, and I highly recommend you view these.
“She could now tell when she had to go to the bathroom up to one or two minutes before she had to go. She could hold a pen, hold a telephone and could even write. Her leg became bigger and almost looked the same as the right leg. The right leg became better because now she would use both legs. She could stand much longer with support but still could not walk. David was most happy about the improvement in her bladder control and her hand movements but for her parents, the most important thing was that the disease stopped its progression.”
- David Loredana’ patient experience
David’s patient experiences and videos:
http://www.stemcellschina.com/content/view/361/177/lang,en/
“By the end of a month in China, Elena had made great progress. She had much greater control of all the muscles in her body and was much stronger overall than before. She was now able to sit up without support and hold her head upright for extended periods of time. She was able to move her head from side to side repeatedly, before she had only been able to move it to one side, but not back. After the treatment she was able to hold her arms out by herself, especially her right arm, though she also got more improvement in her left one. She was also able to move her arms across her chest and touch her shoulder, something she had never been able to do before. She had more power in her leg muscles and was able to use them to push against things.”
- Gologan Elena’s Patient Experience
Gologan’s patient experiences and videos:
http://www.stemcellschina.com/content/view/725/417/lang,en/
Prices of Treatment
The following prices are valid from March 15, 2008 to June 15, 2008. Please note: Prices for treatments in China are reviewed on a quarterly basis and are therefore subject to change. All prices are in US dollars.
Basic Treatment Program (25-35 days)
The choice of how many Stem Cell Transplants (SCT’s) to have is ultimately up to the client but we do advise that you follow the recommendations of your medical consultant.
> 4 SCT’s are $20,000.00 USD (20K) …20 day stay
> 5 SCT’s are $23,300.00 USD (23.3K) this is a savings of $200.00 USD if the arrangements for 5 SCT’s are made at the time of your registration …25 day stay
> 6 SCT’s are $26,300.00 USD (26.3K) this is a savings of $700.00 USD if the arrangements for 6 SCT’s are made at the time of your registration …30 day stay
> 7 SCT’s are $29,300.00 USD (29.3K) this saves you a total of $1200.00 USD if the arrangements for 7 SCT’s are made at the time of your registration …35 day stay
**These discounts do not apply if you wait until you are on site to opt for additional stem cell transfusions**
Included are free transportation to and from the hospital and the local airport and free accommodations at the hospital for the client and one caregiver. We also offer a complementary rehabilitation program. This therapy which is customized for each individual patient is provided free of charge and may be 1 to 2 hours done 4 to 6 times per week depending on the patient’s ability to participate (Sunday’s off). Meals and laundry service are not included. Meals are not served at hospitals in China. You can have your laundry picked up and done by an outside service at a reasonably low price.
*Additional transfusions booked at least one month prior to treatment (this is on a case by case basis depending on room availability) are US $3,500 each. Each transfusion may require an additional 2-5 days in the hospital. This option is only available to those already participating in a full treatment program.
*If up opt for additional transfusions outside of the above parameters and/or during your hospital stay they will be $3,900 US each. This may require an additional time in the hospital and/or that you stay in a hotel near the hospital, which would be at your own cost. This option is only available to those already participating in a full treatment program.
Transportation by Ambulance: If you are not able to be transported in a van and will require transportation by ambulance, there might be an additional cost of $800 per trip (one way). This must be arranged in advance so please let us know if this is a concern for you.
Electric Wheelchairs: We advise that you bring the lightest and most compact chair you have. Large, heavy, non-folding or non-collapsing chairs are very difficult to travel with and to transport in our SUV type vans which do not have ramps or lifts.Please donate what you can so that she can live and please keep her in your thoughts and prayers.