Thursday, April 1, 2010

MY WISH LIST (18 to 22 week old)


This picture was taken the day that Santiago rolled over for the first time. My husband and I were waiting for this to happen for a while, so we celebrated it if Santi won a gold medal. We asked our little angel to do it a few more times and he delivered a perfect performance every occasion making us the proudest parents in town!. After his fourth or fifth “act”, I looked at my husband and said: “I wonder when is he going to sit up?”. Human beings are unsatisfied creatures by nature, we always want more and I was no exception. Once, all I yearned was for Santi to be JXG free and learning from most experienced parents the best way to deal with the condition. Yet, in the middle of the journey, I came in contact with many JXG families and my original goal felt too small. Today, not I only want this disease to go away from my son but not to afflict any other kid. My vision is a world free of JXG and where there are cures for all histiocytic disorders. In order to fulfill this new mission, this blog should: 1) Provide JXG families and their loved ones with information and emotional support. 2) Give people the opportunity to take action by raising funds for research, urging government officials to help the cause and increasing awareness. The task seemed enormous and endless but it did not matter to me. JXG has the characteristics of resilience and patience and so do I. I started my efforts by researching many successful organizations that share my vision. I learnt a lot about fighting histiocytosis and more ideas kept invading my brain. One of my steps was to contact the Histiocytosis Association of America (HAA) and after becoming familiar with their programs, I underwent their training and became one of their volunteers. I also created a Juvenile Xanthogranuloma Online Support facebook account to reach out to more families. With the help of some members of our group and HAA staff, I added a “FAQ” section to the blog and I improved the “News & Events” and “About JXG” sections of the page. In conjunction, I wrote to some local and national health shows asking them to have programs on histiocytosis (no success here yet) and I signed up to Change.org and similar agencies that provide petitions to benefit families suffering a rare disease. Lastly, I followed the advice of creating a new webpage for our group (with its own domain, hosting, etc.) and as I have no clue on how to do this, I asked for help to two of my computer savvy friends. They both said yes with no hesitation and jumped on the project right away. With so many things happening, I had very little time to stay in touch with my friends so when one of them finally got a hold of me, she said: why are you doing all this? It is not your job to fix this problem and when do you find the time for it with a 5 month old baby?” Well, I said: “if it is not the job of the JXG parents to fix the problem, who else is going to do it for us?. We know that because histiocytic disorders are considered a rare disease the government will not do too much about it. And regarding the time, I do my “Histio Activism” very early in the morning after I feed Santi his early breakfast. He makes sure I wake up”. After 4 weeks into my work, I started to feel exhausted and a little bit discouraged. The short nights and the lack of responses from many people and institutions were definitely taking a hit on me. My initial enthusiasm and optimism were fading away and isolation and impotence were looming back. Having worked against sexual violence and other forms of oppression, I recognized the symptoms. Sooner or later they attack anybody that fights any social cause. I felt confused about my new goal, “was I really overdoing it?”. I thought about it deeply and I realized that all these projects were my way to fight back, but something did not feel right. In the last couple of weeks, Santi had another episode of lesions. Many new bumps developed and the condition moved from his face and head to his back, neck and extremities. I cannot tell you exactly how many lesions he has now, I stopped counting when we crossed the 60 neighborhood. Besides, who cares about numbers at this stage! After a few more days of introspective thinking, I was able to see that my excessive work for the blog and the cause, although very praiseworthy, was a escape not to feel my anger, fear and powerless with this new relapse. But how could I find a balance? I kept wondering. Last Sunday, we all went to the zoo, and my question was timely answered. As we walked out of the manatees exhibit, I read in the wall: “We cannot do great things on this Earth, only small things with great love”—Mother Teresa.

*My deepest thanks to Andrea Arredondo, Esteban and Carolina Soza who joined the cause by helping with the creation of a new Juvenile Xanthogranuloma Online Support site.

37 comments:




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      just got diagnosed with HSV1, and reading this actually made me feel like crawling and crying like a baby. The outbreak I have right now is genital and in my throat and mouth, I talked to the doctor who did the blood test on me and said over time that it would eventually get much better. She said that what I’m having is a massive outbreak and is unusual, but that it may be due to the fact that I stressed myself out over it so much. She also told me even though I have it in the genital area that It doesn't mean that I needed “private to private” contact to acquire it. But this did make me feel a whole lot better about the whole situation. For anyone else to have HSV1 after all this stress and pains am passing and the doctor saying all such of crap i was not convince by his Theory so i decided to go on the internet and saw this comments by Rose who testify about how she get cured by root and herbs by Dr AZUKA, when i first bump into it i didn't believe the comments at first so i decided to confront her on Facebook and really know what and how did it work because my doctor told me there is no cure for herpes, so i really contacted DR AZUKA, he responded in A minute the only thing he ever ask for was just the items of which he will use to prepare for the herbs, after all this he send the herbs through courier Services, within a week i was cure just like that without no struggle or stress, if you are out there in need of cure contact him with his email address: Dr.azukasolutionhome@gmail.com OR reach him on his mobile phone +2348132777335

      Delete
    10. Hi, I am Patrice cythia, from Houston, Texas, USA. I was living with HPV(human papilloma virus) for almost 2 years, i was not myself, my body was always inching with pains until i was on the internet searching for a remedy. So luckily, i was reading testimonials of clients who was cured of herpes by the amazing spell caster named Dr idedia, an ancient spell doctor from West Africa.I contacted him by email, and within 15 minutes he got back to me and ask of my details which i provide to him, he consulted his oracle and told me the solution to my problem and how to go about it, i did is he told me and about the two days i got the cure which he prepared and send to me through DHL service, i took the cure as instructed by him getting to two days i was cured, my HPV(human papilloma virus) was cured up. All thanks to the superb healing herbs of Dr idedia.
      You too can get in contact with him today if you wanna be cured from HPV(human papilloma virus) you having by
      email: dr.idediatraditionalhealinghome@gmail.com or what'sap +2349074505296
      you can still get in touch with me to know more my cure, here is mine email patricecythia@gmail.com
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      Delete
  2. i am here to give testimony of how i got back my husband, we got married for more than 9 years and have gotten two kids. thing were going well with us and we are always happy. until one day my husband started to behave in a way i could not understand, i was very confused by the way he treat me and the kids. later that month he did not come home again and he called me that he want a divorce, i asked him what have i done wrong to deserve this from him, all he was saying is that he want a divorce that he hate me and do not want to see me again in his life, i was mad and also frustrated do not know what to do,i was sick for more than 2 weeks because of the divorce. i love him so much he was everything to me without him my life is incomplete. i told my sister and she told me to contact a spell caster, i never believe in all this spell casting of a thing. i just want to try if something will come out of it. i contacted Zuma Zuk for the return of my husband to me, they told me that my husband have been taken by another woman, that she cast a spell on him that is why he hate me and also want us to divorce. then they told me that they have to cast a spell on him that will make him return to me and the kids, they casted the spell and after 1 week my husband called me and he told me that i should forgive him, he started to apologize on phone and said that he still live me that he did not know what happen to him that he left me. it was the spell that he Zuma Zuk casted on him that make him comeback to me today,me and my family are now happy again today. thank you Zuma Zuk for what you have done for me i would have been nothing today if not for your great spell. i want you my friends who are p***ng through all this kind of love problem of getting back their husband, wife , or ex boyfriend and girlfriend to contact spiritualherbalisthealing@gmail.com or call +2349055637784. and you will see that your problem will be solved without any delay.

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  4. DOCTOR JOHN. YOU ARE GOD SENT TO HELP PEOPLE LIFE, I PRAY YOU WILL NOT DIE BEFORE YOUR TIME
    This is real take it serious, who will believe that a herb can cure herpes, i never believe that this will work, i have spend a lot getting drugs from the hospital to keep me healthy, it got to a time that i was waiting for is death to come because i was broke, one day i hard about this great man called Dr JOHN who is well know for Herpes, HIV, and Cancer cure, i decided to email him I didn't believe him that much, I just wanted to give him a try, he replied my mail and Needed some Information about me, then I sent them to him, he prepared a herbal medicine (CURE) and sent it through Online Courier Service for delivery, he gave my details to the Courier Office. they told me that 3-5 days I will receive the package and after receiving it, i took the medicine as prescribed by him at the end of the one week, he told me to go to the hospital for a check up, and i went, surprisingly after the test the doctor confirm me Herpes simplex virus negative, i thought it was a joke, i went to other hospital and was also negative, thank you for saving my life, I promise I will always testify of your good works. if you are herpes simplex virus patient, OR you are be helping by someone before i will like to advice you to give this man a try and see what will happen to your life don't worry about the money you have be use contact him and I am sure you will get cured, contact him via: Email: lupuscure2016@gmail.com 0R
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    ReplyDelete
  5. I'm here to share to the worldwide that Dr.Zuku is a Powerful Herbal Medicine man. that can cure your disease if you can only contact him and let him help you. I was cured from my Herpes Disease. after suffering since 9years ago. but when i contact him on the internet. he gave me a Natural cure that ended my suffering after using it for two weeks. i went to check myself on the hospital and i was tested negative. I can't more happier but to say thank you sir and i use this medium to say to everyone don't waste any time to contact this powerful herbal Dr,Zuku On any Kind of Disease he is Ready to help you. You can reach him through

    Email:drzukuspelltemple@gmail.com

    Dr.Zuku Cell Number:+16177296273

    contact Dr Zuku Blogs: https://drzukuspelltemple.blogspot.co.ke/

    Dr.Zuku Website: https://drzukuspelltemplewhereallkindsofproblemisbesolve.wordpress.com/contact/

    ReplyDelete
  6. I'm here to share to the worldwide that Dr.Zuku is a Powerful Herbal Medicine man. that can cure your disease if you can only contact him and let him help you. I was cured from my Herpes Disease. after suffering since 9years ago. but when i contact him on the internet. he gave me a Natural cure that ended my suffering after using it for two weeks. i went to check myself on the hospital and i was tested negative. I can't more happier but to say thank you sir and i use this medium to say to everyone don't waste any time to contact this powerful herbal Dr,Zuku On any Kind of Disease he is Ready to help you. You can reach him through

    Email:drzukuspelltemple@gmail.com

    Dr.Zuku Cell Number:+16177296273

    contact Dr Zuku Blogs: https://drzukuspelltemple.blogspot.co.ke/

    Dr.Zuku Website: https://drzukuspelltemplewhereallkindsofproblemisbesolve.wordpress.com/contact/

    ReplyDelete
  7. I never thought i would be HIV negative again after been diagnosed in 2015, i have tried everything possible in life from one doctor to another, one hospital to another, series of tests, different kinds of medication, i had already lost hope until i meet Great Dr. OSAGIE online testimonies, a specialist in herbal medication from Africa, i contacted him (drosagiesolutiontemple@gmail.com OR
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    -ALS
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    -LOW SPERM COUNT
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    -STROKE
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    -PILE
    -HYPERTENSION
    -LOW SPERM COUNT
    -ASTHMA
    -CANCER
    -BARENESS/INFERTILITY

    ReplyDelete
  8. I never thought i would be HIV negative again after been diagnosed in 2015, i have tried everything possible in life from one doctor to another, one hospital to another, series of tests, different kinds of medication, i had already lost hope until i meet Great Dr. OSAGIE online testimonies, a specialist in herbal medication from Africa, i contacted him (drosagiesolutiontemple@gmail.com OR
    DROSAGIESOULTIONTEMPLE@YAHOO.COM) and he prepared HIV herbal medication for me which i took for 7days and now i am completely cured. i want to use this medium to express my gratitude to him for saving my life and curing me from HIV, for taking away all my pains and sorrows, I''m indeed grateful and i am so happy I''m now HIV negative. i will continue to tell the good news of your great works to everyone, if you have HIV or other disease contact him, Email: his email: (drosagiesolutiontemple@gmail.com OR
    DROSAGIESOULTIONTEMPLE@YAHOO.COM ) or His Whatsapp number: +2347030465649...thank you He also have a herbal cure for Following DISEASES,this is 100% Real
    -COLD SORE
    -ALS
    -LOWER RESPIRATORY INFECTION
    -LOW SPERM COUNT
    -STAPHYLOCOCCUS AUREUS
    -STROKE
    -IMPOTENCE
    -PILE
    -HYPERTENSION
    -LOW SPERM COUNT
    -ASTHMA
    -CANCER
    -BARENESS/INFERTILITY

    ReplyDelete
  9. Hello everyone, i am here today on this forum giving a life testimony on how I was cured from HIV Virus
    while this may sound discouraging and people may not be-live that HIV CURE has be found,while i was once an HIV positive i live with this disease for more than years now, i have been to so many places for help including hospitals wasted money and times hoping that i was going to get cure but nor was able, until God use someone to cure me from this disease (HIV) true the help of a man called Dr osemu with his herbal root herbs medicine. while i don’t have much to say but to give thanks and praise to God almighty who use Sir Dr osemu to extend my life for what you have done for me DR, i will not stop thanking you because you put a smile on my face again.thanks once again if you are into similar problem or with any kind of diseases you can contact Sir Dr osemu on his mail drosemuspellcaster@gmail.com or call him or whatsapp on +2349073889037 and i will not stop thanking you DR osemu for what you have done for me in my life, i will keep posting to the world for them to no that you are in existence , thanks for your audience and i hope you find help like i did for what he has done for me, if you are into similar problem like HERPES,HEPATITIS B,CANCER,DIABETICS.do not wast time to contact him now his WhatsApp +2349073889037 and his email drosemuspellcaster@gmail.com

    ReplyDelete
  10. Hello everyone, i am here today on this forum giving a life testimony on how I was cured from HIV Virus
    while this may sound discouraging and people may not be-live that HIV CURE has be found,while i was once an HIV positive i live with this disease for more than years now, i have been to so many places for help including hospitals wasted money and times hoping that i was going to get cure but nor was able, until God use someone to cure me from this disease (HIV) true the help of a man called Dr osemu with his herbal root herbs medicine. while i don’t have much to say but to give thanks and praise to God almighty who use Sir Dr osemu to extend my life for what you have done for me DR, i will not stop thanking you because you put a smile on my face again.thanks once again if you are into similar problem or with any kind of diseases you can contact Sir Dr osemu on his mail drosemuspellcaster@gmail.com or call him or whatsapp on +2349073889037 and i will not stop thanking you DR osemu for what you have done for me in my life, i will keep posting to the world for them to no that you are in existence , thanks for your audience and i hope you find help like i did for what he has done for me, if you are into similar problem like HERPES,HEPATITIS B,CANCER,DIABETICS.do not wast time to contact him now his WhatsApp +2349073889037 and his email drosemuspellcaster@gmail.com

    ReplyDelete
  11. All thanks to Dr omohan, i have being suffering from HIV for so long. till i met a woman who told me about a particular doctor who has cured her from HIV, i thought it was a scam, till i collected her number and i called her, she is an america woman,she told me all i need to know about this doctor , and i contacted the doctor and explain my situation to him and he told me all i need to do.And am happy to tell the whole world now that am HIV negative, may the good lord grant you long life doctor.If you are suffering from such illness or you have any spiritual problem, hurry up and contact doctor omohan via email:dromohanherbalmedicine@gmail.com. call or whatsapp him via:+2348164816038

    ReplyDelete
  12. I have been suffering from (HPV) disease for the past four years and had constant pain, During the first year,I had faith in God that i would be healed someday.This disease started circulating all over my body and i have been taking treatment from my doctor, few weeks ago i came on search on the Internet if i could get any information concerning the prevention of this disease, on my search i saw a testimony of someone who has been healed from (Hepatitis B and Cancer) by this Man Dr osaze oshoregbemhe and she also gave the email address of this man and advise we should contact him for any sickness that he would be of help, so i wrote to Dr osaze oshoregbemhe telling him about my (Herpes Virus) he told me not to worry that i was going to be cured!! hmm i never believed it,, well after all the procedures and remedy given to me by this man few weeks later i started experiencing changes all over me as the Great Dr osaze oshoregbemhe assured me that i have cured,after some time i went to my doctor to confirmed if i have be finally healed behold it was TRUE, So friends my advise is if you have such sickness or any other at all you can email oshoregbemhehealinghome@gmail.com or call number +2349053289227.

    kelvin donald

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  13. I want to thank a great herbal Dr muthuka for helping me get cure of my HERPES MPLEX
    DISEASES, for like 3 yrs Now I have been suffering from HERPES
    SIMPLEX, but last two (3) week as I was searching through the Internet I met a
    post about a woman called adams tracy and some other people , who was talking about how they was cured by Dr muthuka so I
    decided to give it a try to see if he could save my life Luckily for
    me I was cured by him. I cannot stop thanking him for what he has just done
    for me if you are into similar problem you can contact on muthukaherbalhome@gmail.com
    is a great herbalist that treats and cure
    all manner of diseases like Herpes, HIV, Cancer, Syphilis, Hepatitis
    B, all types of Cancer, Gonorrhea, and solves life's problems that you
    might have etc.contact him today and he will help you solved your
    problem his email via his muthukaherbalhome@gmail.com and you can call or whatsap him with this number +2347036143964 or call +2348105817441 okay thank you all and God bless

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  14. just got diagnosed with HSV1, and reading this actually made me feel like crawling and crying like a baby. The outbreak I have right now is genital and in my throat and mouth, I talked to the doctor who did the blood test on me and said over time that it would eventually get much better. She said that what I’m having is a massive outbreak and is unusual, but that it may be due to the fact that I stressed myself out over it so much. She also told me even though I have it in the genital area that It doesn't mean that I needed “private to private” contact to acquire it. But this did make me feel a whole lot better about the whole situation. For anyone else to have HSV1 after all this stress and pains am passing and the doctor saying all such of crap i was not convince by his Theory so i decided to go on the internet and saw this comments by Rose who testify about how she get cured by root and herbs by Dr AZUKA, when i first bump into it i didn't believe the comments at first so i decided to confront her on Facebook and really know what and how did it work because my doctor told me there is no cure for herpes, so i really contacted DR AZUKA, he responded in A minute the only thing he ever ask for was just the items of which he will use to prepare for the herbs, after all this he send the herbs through courier Services, within a week i was cure just like that without no struggle or stress, if you are out there in need of cure contact him with his email address: Dr.azukasolutionhome@gmail.com OR reach him on his mobile phone +2348132777335





    just got diagnosed with HSV1, and reading this actually made me feel like crawling and crying like a baby. The outbreak I have right now is genital and in my throat and mouth, I talked to the doctor who did the blood test on me and said over time that it would eventually get much better. She said that what I’m having is a massive outbreak and is unusual, but that it may be due to the fact that I stressed myself out over it so much. She also told me even though I have it in the genital area that It doesn't mean that I needed “private to private” contact to acquire it. But this did make me feel a whole lot better about the whole situation. For anyone else to have HSV1 after all this stress and pains am passing and the doctor saying all such of crap i was not convince by his Theory so i decided to go on the internet and saw this comments by Rose who testify about how she get cured by root and herbs by Dr AZUKA, when i first bump into it i didn't believe the comments at first so i decided to confront her on Facebook and really know what and how did it work because my doctor told me there is no cure for herpes, so i really contacted DR AZUKA, he responded in A minute the only thing he ever ask for was just the items of which he will use to prepare for the herbs, after all this he send the herbs through courier Services, within a week i was cure just like that without no struggle or stress, if you are out there in need of cure contact him with his email address: Dr.azukasolutionhome@gmail.com OR reach him on his mobile phone +2348132777335

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  15. I am here to testify about a great herbal spell caster called Dr.ezomo who helped me cure my HERPES SIMPLEX VIRUS . I was infected with HERPES SIMPLEX VIRUS in 2015, i went to many hospitals for cure but there was no solution, so I was thinking how can I get a solution out so that my body can be okay. So One day I went on line on the Internet to know more clue about the Herpes Simplex Virus i came across a review of a lady saying that she got her Herpes Simplex Virus cured by A great herbal spell caster Called Dr. ezomo. And she also went as far to drop an email address and including Dr. Ezomo telephone number and advise anyone to contact Dr. ezomo for any kind of help. So i gave a try by contacting him . his email and explain my problem to him. He told me all the things I need to do and also give me instructions to take, which I followed properly. Before I knew what is happening after two weeks the HERPES SIMPLEX VIRUS that was in my body got vanished . so if you are also heart broken by any deadly diseases like HERPES, HIV, shingles, low sperm count, HPV, Cancer, Hepatitis B, etc this great man is extremely the best in which I have seen and applauds and if you also need a help in curing any kind of disease, you can also email him via: dr.ezomorootandherbals@gmail.com or whapps number +2349069171173 He can also cure so many sickness

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