Duchenne Muscular Dystrophy

Duchenne Muscular Dystrophy

Hi! I'm back again, sorry for not posting since november.

Today my mother punished me without my phone so I thought today could be a good day to post something about a subject I learned recently.

It's called Muscular Dystrophy. Maybe you never heard about it. We are studying it in my class...

there are some different types.

-Duchenne Muscular Dystrophy (the most common and the most dangerous)

-Becker Muscular Dystrophy

-Congenital Muscular Dystrophy

-Emery-Dreifuss Muscular Dystrophy

among others...

The Muscular Dystrophy is a set of genetic diseases that cause progressive weakness and muscle degeneration as time goes by. These disorders can vary depending on the age, of the gravity and the affected muscles. The most of this patiens will lose their ability to walk, and as time goes by, their ability to move.

Some types of muscular dystrophy, like the Duchenne, will affect the heart and the brain among other organs, because they are also muscles.

Muscular dystrophy is not contagious, it is a genetic disorder which you are born with that generally is suffered by boys.

Studying this subject made me think a lot about what kind of live these people have, I learned a lot about this horrible disease and what it feels like to lose little by little your life's abilities. Children who are born with DMD may look like healthy children, the sympthoms don't manifest until they are 3 or 4, and from there, everything start to go down. Around 9 years old they can not walk anymore and they would use a wheelchair, at 12 years old they may have more difficulties to move and do their life's daily tasks. By 15 years old they can hardly take their hand to their mouth...

Their life expectancy is around 30-35 years old, but thanks to the medical advances and a good treatment their life expectancy could increase and have a better life quality.

Some months before I knew about DMD I watched the video of a Chinesse boy who had this disease, and lived in an orphanage in Wenzhou. His name is Walsh, and he took my heart.

I could see how he lost his ability to walk due to the progressive disease, and remained in a wheelchair. He recives no treatment.

https://youtu.be/IlVMkk_iaOk

When I started studying the Duchenne Muscular Dystrophy I couldn't stop thining of him, and I searched in Reece's Rainbow more profiles of children who suffered DMD.

The faces I saw were...

Jerome

 Boy, born May 2009.

Duchenne Muscular Dystrophy.

He is in Latin America, waiting for a family while he suffers alone the disease. There's nothing wrote about him in his profile, just his date of birth and his condition. He's been listed since 2015.

Please, take a look to his profile, if you can't adopt take the time to learn about him and share his profile so more possible families can see him. https://reecesrainbow.org/102226/jerome



Kevin

 Boy, born March 2007.
Muscular Dystrophy.
Kevin's story is so sad. He arrived to the orphanage when he was 4 years old, scared, lonely and confused. He appeared to be in good health overall. Time later he was sent to the U.S with a family as a part of an agency's host program, at that time he was active and healthy-looking, but when he arrived to his orphanage his health started to decline. He couldn't walk long distances without falling, and needed constant help to go to the toilet, and getting up from the floor. He can only eat soft foods that are asy to chew.
He has experienced many traumas in his short life, but he has remained a positive outlook. Now he is living in a foster home in his orphanage and he takes care of youngest children. Kevin needs a forever family, someone to trust in, who provides him the care and treatment he needs. https://reecesrainbow.org/100975/kevin-3



Bobby

 Boy, born December 2011.
Progressive Muscular Dystrophy.
Bobby is in a steriod regime and can walk, run and jump. There are not seen a negative impact on his physical development. He is an active child, he enjoys playing with blocks and cars, he loves music too. He likes playing outside and laughing with other children. Bobby has good self care skills, he can feed himslelf, dress and undress and sometimes he helps the other children. His caretakers are very fond of him.
Bobby is waiting for a family to call his own who can help him access to the treatment he needs.
https://reecesrainbow.org/91352/bobby-2



Emerson

 Boy, born October 2011.
Progressive Muscular Dystrophy.
Emerson is a shy, quiet and lovely boy. Thought he is a little introverted around strangers, he's quite lively once he is in a familiar envoirment. Due to some problems, he was tested for Muscular Dystrophy and was found possitive. Currently they don't see any symptoms of the MD, he can sit, crawl, and walk while holding into something. He also shows fine motor skills, he can scribble with a pen, pick up small objects and feed himself. He understands simple instructions and imitates simple words like "mom" or "dad".
Emerson is waiting for a famly who can provide him all he needs, could you help him?
https://reecesrainbow.org/83430/emerson



Zach

 Boy, born July 2008.
Progressive Muscular Dystrophy.
Zach is a joyul and cheerful child with an infectious smile. He is good in interacting with other children and likes playing with cars, dolls and animals. He enjoys playing pretending games, and is a smart boy with a good memory. He was hosted in a family in December 2014 and they can say many possitive things about him. By that time he was 6 years old and he adapted very well to the family life. He likes to show he can take on big-kid responsabilities, he is good in maintaining routines.
He was able to walk normally, except that he has to be more careful in negotiating uneven surfaces, works harder to get up from the floor, and will need help to getting into higher places.
He doesn't let this slow him down, he accepts help from adults and sometimes he wants to show he is able to do things alone. He enjoys being held, cuddled and paid attention to.
He needs a loving family who can provide him the medical care he needs. He loves being a part of a family.
https://reecesrainbow.org/56043/zach


All these kids are facing the hard reality of the Muscular Dystrophy and they're all alone, without someone who guide them and love them. Some of them have not showed any sympthoms yet, and this stage is a good moment to start the physical theraphy to help them slow down the symptoms. They live in an ervoinment with little resources and this could disserve them.


If you would like to know more about this kids you can click on the link I posted in their profiles, If you'd like to know more about Walsh you can visit the facebook page Children's House International or email nina.t@chiadopt.org

There is a fundation called Duchenne Parent Project that provides psychosocial support to people affected by Muscular Dystrophy and their families. It's an association at an international level that also works hard to help the research and to raise awarness, they have many resources that can help people and also they help you to get in contact to more families who are struggling the same.             

If you can't adopt you can donate, if you can't donate you can share, and if you can't share you can tell people about them. We can do something within our possibilities.

Thank you for reading, share donate and love :)

Transferred - Urgent Children!

Transferred - Urgent Children

Hello guys, I'm sooo sorry! I didn't post anything for almost 4 months ago!

I've been very busy and I not even had time to connect to the blog.

I've been thinking about posting something about the transferred and most urgent children from long ago. I think it's so important to think in those children because one little change in their lives could even mean a difference between life and death.

What does it mean to be transferred?

It means in many countries (Eastern Europe) if orphaned children with special needs are not adopted when they reach a certain age, they are transferred forever to an adult's mental institution where is very difficult to take them out. They are transferred to leave their space to another child who is new arrival. The age of the transferred child can vary depending on the situation.

It may not look so terrible, but adult mental institutions are places where children often die due to the neglect and lack of resources. They are like "hiding them away" and it is a thing that not many people know about.

                             

🔺The before and after of Kyle, a Russian child who was transferred. (Died in 2013)

No child deserves to suffer like that. They deserve to be happy and to blossom in a family, they deserve to be treated like human beings.

The following profiles belong to children listed in Reece's Rainbow who are at risk of being transferred or were already transferred.



STEVEN

  Boy, born 2007
Brain malformation, Congenital anhidrotic ectodermal dysplasia epileptic syndrome, Severe mental retardation, Nystagmus.
His profile says nothing about him, but he needs out. He urgently needs medical care, nutrition and a good family to love him. He was already transferred. https://reecesrainbow.org/110520/steven



ANNA

  Girl, born 2009
Internal hydrocephalus (operated), Spastic tetraparesis, Open oval window, Development delays.
Her profile says she is a very loving and sociable girl who loves to get attention. She is making big steps in her development, she just needs a family to help her reach her full potential and to show her what love feels like. She's facing transfer.

https://reecesrainbow.org/98997/anna-2



ELLEN

  Girl, born 2010
Microcephaly, Cerebral palsy.
Nothing wrote on her profile. She is facing imminent transfer to the institution.
She needs urgently a family to take her out of there before it's too late, sure she would improve a lot in a family. https://reecesrainbow.org/90947/ellen-2



LENNIE

             
Boy, born 2012
Hypoplastic right heart syndrome, FAS (Fethal Alchol Syndrome)
He seems to be a cute, happy child with a big personality. He looks tiny, he woul improve greatly in a forever family. He is facing imminent transfer to the institution. https://reecesrainbow.org/85108/lennie



EMERY

  Boy, born 2007
Convergent squint (operated), Slight mental delay, FAS (Fethal Alchol Syndrome), Epilectic reaction, Nanism of somatogenic genesis, Poor speech.
He interacts well with other children, he is delayed, but has potential in a family. He needs out urgently because he is facing imminent transfer. There is so much hope and potential for him that he will not get in an orphanage. It will benefit him to be with older children to set an example. https://reecesrainbow.org/70008/emery



NASH

  Boy, born 2004
Hydrocephalus.
Already transferred.
He is a sociable boy who likes to have someone next to him. He is a small sized, like a preschooler. He desesperatly wants to be loved. He is so smart, even his speech is often slurred, but only slighty. He's a big helper of he nurses, he carries toys and pushes wheelchairs. It is suspected that he has some kind of visual impairment. 

https://reecesrainbow.org/41583/nash



ARNOLD

  Boy, born 2005
Lower tetraparesis (Cerepral palsy)
Nothing wrote about this boy. There is a picture from him in a swing looking happy to pose at the camera. He does not deserve to live in this place, he needs a family forever to love him and show him his full potential. He is facing imminent transfer to the institution. https://reecesrainbow.org/17567/arnold303



JUDE

  Boy, born 2011
Severe delay of physical and mental development.
He looks like a curious boy whith a big need of love. He is skinny and needs good nutrition. He has very minor orphanage behaviors. There is a lot of videos avaiable, he is a very sweet boy and really needs a family. He is facing transfer. https://reecesrainbow.org/97726/jude-3



MADISON

  Girl, born 2004
Severe mental delays, Anemia, other disorders of optic disc, other specified deformities of limbs.
Madison will be transferred to the institution soon. There's barely info about her in her profile, it just says she is delayed, and does not talk, but she understands and follows simple directions. She needs a family before it's too late. https://reecesrainbow.org/84473/madison



STEPHEN

  Boy, born 2006
Minimal brain dysfunction, Pyramid insufficiency, Cardiomiopathy, Hypermobility of hip joints, Concomitant alternating convergent squint.
He is described as a sweet boy. He's very obedient and cooperative and follows instructions. He doesn't look to have very significant needs, he functions very "typically", maybe just some delays.
He could be transferred because he is already over age. He needs a family as soon as possible. https://reecesrainbow.org/57953/stephen



ALICIA

  Girl, born 2004
HIV+ (Born to HIV+ mother), possible FAS (Fethal Alchol Syndrome)
She is said to have so much potential, and will need a family to help her focus her attention. She is a very sweet and loving girl and she will gladly take all the hugs and kisses you can hand out. She was in a good orphanage who take care well of the children and valued them, but she has been transferred. She is in urgent need. https://reecesrainbow.org/1743/alicia1102



BRANDON

  Boy, born 2005
Cerebral palsy, Socially and emotionally delayed, Speech delays, Crossed eyes and Astigmatism.
Brandon has been transferred. He is being neglected, drugged and restained there, he has worsened a lot because of being transferred. He could have been helped and improved thanks to theraphy and medical care, but he was not given the chance... He needs to be adopted as soon as possible or it could get worse. Please help him find a family! 

https://reecesrainbow.org/8337/brandon2906

I just posted 12 profiles of some of the children who are in urgent need of finding a family. There are thousands of children in this situation who need someone to speak for them.
You could help greatly if you share their profiles in your social media using hashtags to reach more people.

Thank you for reading and don't forget to share, donate and love :)

Help Jayce Come Home

Help Jayce Come Home

Hello all! Today's post it's gonna be a little bit different...

This is an urgent call to help a boy in desesperate need, do you remember this face?

I talked about sweet Jayce some posts below.

I'll update you about his situation... He has a committed family fighting to bring him home.

He is aging out, this means if his adoption is not completed before turning 16, he will remain an orphan forever and will be lost in an institution. He has one year to be adopted and his situation is very critical, he is badly malnourished and besides he needs theraphy and medication. He has lived his entire life away in an orphanage without stimulation, the longer a child spends in an institution, more sequels he will have.

   He is 15 years old!

I'd like to ask you to please, help Jayce come come as soon as possible by donating to his Reece's Rainbow account, where you can help with the costs of his adoption. He already has a $15000 Grant Avaiable.

The most important is that he can be adopted as soon as possible, he needs urgent help, and we don't want him to end up like sweet Ambrose, who had a family committed too but aged out before the family completed his adoption.

Adoption for these children it's literally the difference between life and death, so many children have passed away or have been condemned to a life hidden away in an institution because they have not been seen on time.

Jayce is on time to have a family and deserves a second chance!

You can help and support the committed family here http://reecesrainbow.org/97043/jayce 

http://reecesrainbow.org/118523/sponsorjayce or here http://www.handofhelpinadoption.org/2017/04/a-family-for-jayce.html

Share his story with someone you know who can help, share, donate and love :)

Urgent! Aging Out Children

Urgent! Aging Out Children

Hello all!! Sorry for not posting so long ago, I've been doing many things and yesterday I thought about updating the blog. Today I will get to the point. There are many children whose time is running out, some of the most urgent ones will be posted bellow, please notice them!

At just a few months of aging out...

Ryan

  Boy, born 2001  
Down Syndrome. He has made significant progress since leaving the institution and be placed into a group home. The staff believes that as they continue to work with him, he will continue to improve. The agency team has sent a certified psychologist to spend time with Ryan and assess him in his new home. He feels like a leader and likes helping the other children. His gross motor skills are well developed, he shows some stereothypical movements. He enjoys dancing and prefers to participate in activities and play that involve a ball and interacting with children. He will need a family willing to provide a lot of structure, routine and constancy! ASAP! http://reecesrainbow.org/49063/ryan-6-14



Grayson

  Boy, born July 2001
Down Syndrome, Cerebral Palsy, flail legs, Secondary Multisystemic Central Origin Distrophy, Delay of physical development. As I said before about Grayson, there's nothing wrote about him in his profile... But I have to say he sure has a lot of hidden potential which could only be taken out for a family who love him! He needs a family ASAP or he will be lost forever in an institution!! 💙 http://reecesrainbow.org/97029/grayson



Montgomery

  Boy, born July 2001
Triventricular Internal Hydrocephalus, Evacuation of an hematoma, Posterior fossa arteriovenous malformations (AVM), Mild to moderate Mental Delay. Montgomery's physical development is normal for his age, but his psychomotor development is not. He understands and follows simple instructions. He mantains good eye contact and recognizes familiar people, His abstract thinking is delayed and he lacks of concentration, his memory is short-termed and has difficulties in reproducing words and concepts. Montgomery's emotional development does not correspond to his age and has a low degree of emotional intellect. No agression is observed. He prefers to play individually, but likes to play with others too, he seeks emotional warmth and makes physical contact with the others, taking somebody by the hand and hugging. He is very willing and likes creative activities, needs a family ASAP!  http://reecesrainbow.org/118079/montgomery



Graham

  Boy, born May 2001
Mild Mental Delay, Impaired articulation. Graham has impaired speech and uses limited and poor vocabulary. It is difficult for him to divide his attention and switch tasks and he is easily distracted and loses concentration easily. Graham likes to participate in group activities, and would like to be adopted by a family! Very Urgent! ASAP. http://reecesrainbow.org/116017/graham



Corey

  Boy, born July 2001
Down Syndrome, Torticollis. This handsome boy, needs a family ASAP. There's nothing wrote about him in his profile... But Corey deserves a life with parents who love him, not hidden away like a lost boy to suffer the rest of his life. Please, share him ASAP. http://reecesrainbow.org/109936/corey



Justine


  Girl, born June 2001 
Congenital Microcephaly, Autism. Justine is fully mobile and active. As with all children living in these difficult conditions, this child's cognitive development has regressed significantly since she was younger. She sure has tremendous potential for improvement and deserves a life outside the orphanage. Ages out in June! Needs out ASAP. http://reecesrainbow.org/1704/justine112



Mario

  Boy, born May 2001
Mental delays, Inborn Hydrocephaly, Cerebral Palsy, Anemia.

  I wrote about him before, I know him from Kalinovka, he is a very sweet and calm boy, very curious about his surroundings. Many of his mates have been adopted and he saw them leave. He has been waiting all his life and he deserves a family as much as his mates do. Please, consider him! ASAP! http://reecesrainbow.org/59321/mario



Fritz

  Boy, born June 2001
Down Syndrome, Possible ASD or sensony challenges. Fritz has blonde hair and hazel eyes. He is considered lower functionating, and really needs a family who is experienced with adopting older children. He is very responsive but needs a lot of self-help and guidance. He would probably do best in a family where he can get lots of attention from his parents and older typical silbings. He ages out in June! Wonderful program, outstanding agency partner. More photos and medical info avaiable. Ages out in June! Needs out ASAP! http://reecesrainbow.org/47762/fritz-l4



Emmalyn

  Girl, born May 2001



Down Syndrome. Emmalyn has been waiting a lot! She has a shy smile and is a friendly and happy young girl. She likes having her picture taken. She would fit in a prepared family. Ages out in May 2017, needs out ASAP! http://reecesrainbow.org/38656/emmalyn



Tanner

  Boy, born July 2001
Down Syndrome, Hearing Impairment, Strabismus. Tanner has delays in all aspects of his development. It is thought he has some degree of hearing loss, but he is not complety deaf. He does respond to some basic commands and also to hand gestures. It's possible that many of his delays could be compensated for once his hearing issues are adressed. He is calm and usually smiling, he is not agressive and doesn't get irritated by the other children. He has a favourite book in each classroom, picks it up and manipulates with it. Tanner observes the other children while they work, he shows interest in pictures of animals. He works with desire in the classes of physical education. He's been listed for 6 years! He needs a family ASAP! http://reecesrainbow.org/1078/b657




And very bad news... The little guy Ambrose I have at the beginning of the blog, the one who I talked about one month ago and had a family committed, has sadly aged out before the family could take him. This news shook me as soon as I saw him in the "Aged Out" category... It is so sad that he had a family comming that could not take him home because of committing too late. Ambrose lost all chances to have the family every child deserves... That's why you need to commit fast when you're thinking about adopting an older child. In many cases you need to complete all the adoption process to free the child from aging out definitely.


         
          Sweet Ambrose at the institution                                                 💙💙





Every single child listed above will end up in the institution too in no family committ for them. It's very important to raise awarness and spread the word so that people realize how critical is the situation these children are living, and possible adoptive families to see them and complete the adoption process quickly.



Thank you all guys for reading, and don't forget to share, donate and love :)

More Aging Out Children

More Aging Out Children

Hi again, how are y'all? During these days many things changed, especially to some children who were moved to the "Aged Out" category and some other children were moved to "At risk of aging out" after a long time waiting.

I've been inactive during a large period of time due to personal reasons and I thought today was a good day to write a post to show some of the children who are in need of being adopted as soon as possible.

Here is the list...

Dominick

  Boy, born May 2004

China. Special Need Listed as Down Syndrome. From someone who met him: He is a very sweet boy who has expressed that he wants to be adopted, he has a very sweet and loving personality and would be a blessing to any family. http://reecesrainbow.org/113276/dominick

Grayson

  Boy, born July 2001

Down Syndrome, Cerebral Palsy, flail legs, secondary multisystemic central origin dystrophy.

There's nothing wrote about his personality/behavior or likes... But I have to say he sure has a lot of pottential hidden which could only be taken out for a family who love him! He needs a family before aging out or he will be lost forever in an institution! http://reecesrainbow.org/97029/grayson

Shirley

  Girl, age 15

Spina Bifida. Shirley moves around independently in a wheelchair. She is very social and easily carries a conversation with people, she likes to do her hair and puts tiaras in it. She is concerned for the younger children and helps them. When helping someone, she feels meaningful and useful. She is very loving and seeks contacts with the people who take care of her. She demonstrated an inquisitive nature and a sense of humor during the interaction. http://reecesrainbow.org/102890/shirley-1-34

Fabio

  Boy, born June 2004

China. Down Syndrome. Fabio is an independent and capable boy. He can take care of his personal needs such as eating, dressing, bathing, and using the bathroom. Fabio is very out-going, active, funny and engaging. He loves riding his bike as well as doing puzzles. Fabio has perseverance and an easy-going personality, he was abandoned at the age of 6. Please, don't let him behind. http://reecesrainbow.org/101823/fabio-2

Mckinley

Girl, born June 2004

China. Growth and developmental delays, Mental delays. Mckinley is living in the foster village, which is on the orphanage grounds. She attends school in the special education class at the orphanage and is in 2nd grade. People who know her say she is a wonderful and considerate little girl. She is not receiving teraphy at this time, she can read books and plays well with others. It is a possibility that she needs glasses. http://reecesrainbow.org/100010/mckinley

Lisa

   Girl, born 2002

She is listed as "Down Syndrome" but it is clear it is a mistake. We don't know what kind of special need she may have, her file does not say nothing about it and neither about her behavior, likes, personality... She is aging out and she needs a family committed as soon as possible, please, think about her! http://reecesrainbow.org/93840/lisa

Justine

   Girl, born June 2001

Congenital microcephaly, Autism. Justine is fully mobile and active. As with all children living in these difficult conditions, this child's cognitive development has regressed significantly since she was younger. She sure has tremendous potential for improvement and deserves a life outside the orphanage. http://reecesrainbow.org/1704/justine112

Aurora

   Girl, born May 2003

China. Brain damage. Beautiful girl, she just has one month to be adopted! She has a strong ability to be self-sufficient. At the orphanage she likes to lead the younger girls, they call her "big sister" and she will happily lift them up to play. She attends now a special education at school, because her pronunciation was unclear, she would use gestures when she spoke to help explain. She learned a lot and has improved. Aurora is a kind girl and especially polite! http://reecesrainbow.org/83435/aurora

Tomo

   Boy, born March 2004

China. Cleft lip/Cleft palate. He had CL/CP surgery when he was younger and has been doing great ever since! He has been living in a foster home almost his whole life, and he has been getting stronger and smarter every day. He is great at sport and is doing very well at school, he can take care of himself and loves to play with friends. He needs a family as soon as possible. http://reecesrainbow.org/71215/tomo

Rogers

   Boy, born May 2004

China. Down Syndrome. Rogers has normal limb development and delayed mental development. He can understand the directions and is gentle, shy, and likes familiar people close to him. He can get along well with other kids, likes playing games, basketball and likes riding bikes with kids in the playground. Ocasionally he is obstinate, but telling him a story can make him smile. Rogers is very loved in his orphanage, and he has been prepared for the transition into a family. Please, see him before it's too late! http://reecesrainbow.org/70116/rogers

Heath

   Boy, born June 2004

China. Complete Hearing Loss. Kind boy who was abandoned shortly after being born. Heath is still in the orphanage and gets along well with other children. He always has a ready smile! At this time he is wearing hearing aids and has a normal intellectual development. He is very active, talkative and energetic. His favourite toy is a rubber ball and is close to his classmates. http://reecesrainbow.org/63421/heath

Mario

   Boy, born May 2001

Mental delays, Inborn Microcephaly, Cerebral Palsy, anemia. I know him from Kalinovka, he is a very sweet and calm boy, very curious about his surroundings. Many of his mates have been adopted and he saw them leave. He has been waiting all his life and he deserves a family as much as his mates do. Please consider him... http://reecesrainbow.org/59321/mario

Emmalyn

   Girl, born May 2001

Down Syndrome. Emmalyn has been waiting a lot! She has a shy smile and is a friendly and happy young girl. She likes having her picture taken. She would fit in a prepared family, she needs to be adopted as soon as possible! http://reecesrainbow.org/38656/emmalyn

Patrick

   Boy, born July 2004

China. Osteogenesis Imperfecta. I have talked about Patrick before... He is a wonderful kid who is in a wheelchair which he is able to wheel around himself. He lives in a community group with 7 "brothers". He is high functionating and receives schooling from an ICC teacher to become more independient. Patrick is loved by all who know him, and knows some basic English. He is extremely cute and endearing and everyone loves him. He is so good at making people feel good. Here is a video of him which has conquered me and has touched my heart https://youtu.be/jU6yJrJqDI0 😊

http://reecesrainbow.org/47712/patrick

Please, share or donate to these children's profiles to help them to be adopted as soon as possible. Thank you very much.