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Epidermolysis Bullosa: “The Worst Disease You’ve Never Heard Of”

September 28, 2016 by nohandsbutours 0 Comments

Epidermolysis Bullosa (ep-i-der-mo-lie-sis bu-low-suh), abbreviated as EB, is a rare, genetic disorder that impacts connective tissue. Approximately 200 children a year in the U.S. are born with EB, and it’s known as “The Worst Disease You’ve Never Heard Of”.

Children with EB are referred to as “butterflies” due to the fragility of their skin. There are several major types, and a number of subtypes within each type. EB presents as fragile skin that can blister and tear from minor friction or trauma. Internal organs and bodily systems can also be affected. Basically, there is a defect of the gene that connects skin to your body and there is nothing for the skin to anchor to.

Currently, there is no cure and daily wound care, pain management, and protective bandages to prevent infection are the only existing options for EB treatment (debra of America). EB is considered a rare or orphan disease as it affects a small percentage of the population.

I was on a business trip that involved a time change and sound asleep when I unexpectedly received the call. As I roused myself from a jet lagged induced sleep, the agency consultant said that she had a very important question to ask (oh no, I thought, some sort of mistake in the mound of paperwork submitted?), and then continued with, “I have the file of a little girl…”

“What?” I managed to say as she repeated her question, followed by, “Yes, yes, of course, yes!” She provided additional information regarding the process and the link to a website for information on EB. I had heard of EB, but that was basically the extent of my knowledge.

The email contained two attachments: the original report in Mandarin, along with several pictures, and a separate attachment that contained the English language translation. I had planned to look at the translated information and make an informed, rational choice before viewing the pictures – but of course I immediately went to the pictures!

The photos of her wounds really frightened me; they looked very painful, and my heart broke for her.

I was really unsure. There was a brief mention of her diagnosis, EB, in the information provided and I immediately researched and continued to educate myself about EB. Once I returned home, I began to call International Adoption Clinics (IAC), pediatric dermatologists, EB Specialists and researchers, each time fully expecting a negative response. Instead each expert responded “manageable” regarding her care, and I realized that I wasn’t calling to determine whether or not to accept her referral.

Unbeknownst to me at the time, that decision had already been made. Almost immediately – in my heart – this was my daughter and I was calling on her behalf… preparing myself and advocating for her and lining up the best medical care possible for her.

In China, I was a first time parent and scared. She was so small….


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I had done extensive research, her children’s home had demonstrated a dressing change during our visit, and another EB mother had thoughtfully left detailed instructions and contact information… I was ready.

The first dressing change took forever. I was terrified that I was going to hurt her and my heart broke again the first time I saw her wounds as she bravely remained still and silent in what had to be a painful process.

Once home, in addition to the usual, expected medical appointments, we also visited a number of EB related specialists, including a pediatric dermatologist, a special needs dentist, and Cincinnati Children’s Hospital (CCH), one of several EB centers in the US.

We’re fortunate to live in an area with access to good medical care and EB professionals. Reflecting back on that time, it was a learning curve (mostly due to the fact that I was a first time parent), and could be a bit overwhelming at times.


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However, we have hit our stride. In addition to routine medical appointments, we continue regular appointments with her EB team. Dressing changes occur several times a week and are part of our routine, simply an added step following bath time and brushing teeth before bed. We order bandages online, and they arrive promptly.

EB is a serious, lifelong condition. However, apart from bandaging, extra medical appointments, and a few other concessions, she is like any other girl her age. She loves anything Disney, she loves to draw and play, and her favorite color is purple.


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The EB community is amazing. I can’t say enough great things. From debra’s nurse educator who promptly and patiently answered my endless questions and educated me about EB, to the EB team at CCH for all of their continued, valuable support.

I will forever be thankful to everyone who has supported and continues to support this journey. The EB community is very active, very organized, and advances are being made. There is information concerning care as well as practical matters such as insurance coverage. This community is always quick to respond and provide encouragement.

Despite its rarity, there are many resources available. Here are resources that I’ve found helpful:

Butterflies Beyond Borders
Cincinnati Children’s Hospital
Dystrophic Epidermolysis Bullosa Research Association of America (debra of America)
Dystrophic Epidermolysis Bullosa Research Association of America (international)
EB Lounge (closed FaceBook group)
Johns Hopkins International Adoption Clinic
McKesson Medical Supplies

I feel immense pride for my daughter, and am deeply humbled by her and others impacted by EB – butterflies are so brave. I have tremendous respect for these extraordinary children and their families.

– guest post by Kimberly; professional images by Gayle Tiller Photography

Making the Grade: Exporing Special Education Service Options

September 27, 2016 by nohandsbutours 1 Comments

It’s September which means school is back in session. And this month at No Hands But Ours, it’s all about Education. From IEPs to OT, from homeschooling to Early Intervention, we’re covering the gamut of educational topics and how they relate to the unique needs of the children who have joined our families through adoption.


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I recently had a conversation with my mom about how I felt that, as a stay at home mom, my college degree in special education was going to waste….

I have always been happy to have earned it, but it was a lot of time and money spent on something that I was no longer using. Her response? That I now use it every second of every day. This conversation not only helped me realize how valuable my degree has become, but also made me wonder how other parents navigate the world of services without one.

When my husband and I were deciding which adoption program to adopt through, the China special needs program just seemed to fit. My husband traveled to China frequently for work, and I had been teaching special needs children for over ten years.

I felt like so many of the needs on the checklist were really quite manageable, even if others didn’t consider them minor. I knew what many of them were, as I had students with those needs in my classroom during my time teaching.

We still did plenty of research when we filled out our needs checklist, but ultimately found that there were very few needs that I hadn’t previously seen with my own students. This made us all the more certain that the China special needs program was right for us.

We now have two amazing sons from China. Both boys were born with cleft lips and palates. It was the only need that was listed in their files. Luckily I had read about other families’ experiences, and knew to expect that they may have additional needs, or that having lived in an orphanage would be a special need in itself.


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Our sons both receive speech and language therapy due to their clefts. They also both get occupational therapy, due to feeding and sensory concerns. Our three year old also gets physical therapy as well. He was gross motor delayed when we brought him home, and although he has come a long way, still needs therapy to help build up his core strength. I had started to get both of our sons’ therapies and service programs lined up before we traveled for them. That way, when we arrived home, services would already be in place.

Before meeting our three year old, we didn’t know how delayed he was, but we did know that he hadn’t had any surgeries for his cleft. We wanted to wait until after his lip closure and first palate procedure, to start speech and language services. We did have Parents as Teachers start within a few weeks of being home with our son.

Once his surgeries were completed, and he had time to heal, we asked our Parents as Teachers educator to refer us to the First Steps program. First Steps provided speech and language services, and physical therapy for our son. When he was close to aging out of the First Step program, we had a transition meeting and evaluation for our school district programs. He now attends preschool and receives his therapies through them at no cost to us.

Our two year old also has cleft, as stated in his file. His biggest other challenge is eating normally. He was in a very good foster facility before we brought him home, and so I guess we kind of expected that he would avoid the feeding issues that many children from orphanages face. We still have had a very long road through feeding concerns. Although we have come a long way, we definitely needed outside help with it.

Since he was at an amazing foster facility, they provided the means for him to have surgery on both his lip and palate. We didn’t feel the need to wait long to start speech services for him, since he had a functioning palate. Before we traveled to bring him home, I had set up his referral to First Steps, and for Parents as Teachers to come about two weeks after we arrived home. Due to his cleft and feeding concerns, he receives speech and language therapy and occupational therapy, through First Steps.

Since he is soon turning three, we will have his evaluation to determine what services he qualifies for through our school district. He may also qualify for the preschool with services, like our three year old. It may be that he only qualifies for outside services, where I will drive him to a school district building for an hour or two every week.


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We have been able to access these services, along with several other area programs, at very little out of pocket costs to us. We also have not had to use our health insurance to access services for our boys. Although we have that option if we ever feel that they need more services than what they are getting.

In recent conversations, I have come to the realization that many families do not know that there are so many service options out there, and that many of them are free if the child qualifies.

Most areas in the US have early intervention programs. There is often more than one program that you can access and, if your child doesn’t qualify for one program, they may qualify for others. There are also auto-qualifiers – meaning that your child doesn’t need to be evaluated to receive services. This is one reason that we checked cleft lip and palate on our medical needs checklist. It is an auto-qualifier for programs in our area.

Keep in mind that services available vary from one area to the next and that states have their own laws, and programs. Many areas have similar programs, but under different names. A fairly simple web search can help you find the services in your area.

First place to start is often your school district web site. They usually will have a parent’s section, and an early childhood/early intervention (EI) section. Use this section to connect to at least one of your area’s service providers. Often times, once you are in the system for one program, they will connect you with others.


Here is some information about different programs to get you started:

1. Early Intervention

Try a search for your town or state name, and early intervention. This will usually bring up at least the first people to contact to get the ball rolling.

Early intervention typically is a program for children birth-age three. They often provide speech and language therapy, occupational therapy, physical therapy, and other therapies as needed. You can contact them, and usually refer your family to the program. There is often an evaluation before services can start. In many areas this is a free program, but in some areas there is a small fee.


2. Parents as Teachers

Try searching for your school district name or your town name and “Parents as Teachers.” This program started in Missouri, and not all states have it. It is often affiliated with or run by the school district and is a tool that the districts use to find and evaluate at-risk-kids.

It is usually a program for children birth – age three or five, it varies by area. They do not provide therapies, but they provide valuable information on how to access therapies in your area. They have programs for kids to attend and seminars for parents. Usually a parent educator will come to the house and do an activity with the child, and provide the parents with several handouts covering many different topics. Their job is to educate parents on where their children should be developmentally, and refer the child to programs and services that they may need.


3. School District Services

Try searching for your school district’s name. Most school districts have a website. If you browse the website, look for any topic that has to do with your child’s age. If you have an older child, it will also provide information on how to get your child evaluated for the services that he/she needs.

Many school districts now provide preschool services. This means that your child may enter the district programs at age three and potentially receive services through them until age twenty-one. If your child qualifies for services he/she will have an IEP. This will be a document that has information about your child’s history, and the child’s goals for the year. There will also be accommodations and modifications listed, if needed. You can often access the services that your child qualifies for through the school district, even if you choose to homeschool or send your children to private school.


4. Self/Private Pay

This does not mean that you pay entirely out of pocket. Typically insurance will cover so many sessions of certain therapy, without further approval. Call your insurance. Find out how many sessions are covered of the therapies you need. Ask about what is needed to get more sessions approved.

Often the providers that your children already see, can be the providers who also bill insurance. For example, our three year old gets OT at preschool. Let’s say the school is offering a really cool class that I think would benefit him, during one of the school breaks. If the class is OT related, I can sign him up for the it, and have the school bill my insurance to cover the cost. Also, if we go to our cleft team visit, and the speech therapist on the team isn’t happy with how our son is progressing, we can have him go to speech therapy with her, and she will bill our insurance.

In many areas there are independant businesses that provide services and classes. These are often more affordable than individual sessions of therapy. These programs are sometimes willing to bill insurance if they are able.

Keep in mind that insurance often has limits, can and will deny coverage, and it is often a battle to appeal. This can lead to an out of pocket cost to your family.


5. Regional Office

Search for the nearest big city to you, and “Regional Office”. Sometimes, it may not come up right away, you may need to add other terms to your search. Try things like Early Intervention, Special Needs, or Therapies. Many larger cities have a regional office or center. They are often affiliated with the smaller offices in smaller areas.

Regional office is like the jackpot. If there is a service you don’t know about, they will! If they don’t have the funding for it, they can direct you toward who will. They are a wealth of knowledge and full of access to grants. Almost anything you need, they can point you in the right direction.

They are a good starting point to access outside services and programs, or other programs than what your district offers.

Think of your biggest thing you would ask for, and if your child qualifies, they will find a way to get it for you! Adaptive equipment, summer camps, therapy needs, respite care, job training, the list can go on forever!


6. Variety Club and Recreation Council

These are two program that Regional Office may connect you to. They offer many activities, programs, grants/funds, seminars, etc. You do not need to go through Regional Office to access these programs.


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7. Think Outside the Box

Keep in mind that almost any activity you do with your child can be a learning experience and therapy for them. Check out the programs at your library, YMCA, convention centers, preschools, malls, rec centers, community calendars etc. We frequent the free activities in our area. I signed my kids up for swimming lessons as soon as I could, and even attend with them, if needed. There are “touch the truck” events in our area frequently, where they get to see and climb on trucks, and usually there are other activities there. Home Depot and Lowes have children programs. Libraries have a ton of events. Check out your convention centers. Look for a kid expo, or kid events. Usually therapy centers, attachment therapists, schools, daycares, and service providers, will all rent a booth at these events…leading to a day of fun for the kids, and a wealth of information for you.

There is a new “gym” opening soon near my house. It is a children’s gym, that offers little classes for little ones. Yoga is my favorite on the list, so I am signing the boys up. It is great for their sensory needs, and to teach them how to calm themselves. Some of these come with a small out of pocket cost, and some of the costs can be covered by some of the programs I listed above.


8. Remember That There are Laws

Keep in mind as you move through the process to get your child services that there are laws the school district and programs must follow. If you need to, go higher up. In most states there is a website for the department of education for the state. Find the website, and contact them if you aren’t getting what you need.

Check out: Wrightslaw

If you want support in IEP meetings, or you want someone who knows the system, there are parent advocates that will go with you and help you fight for the services your child needs. They will be your voice, when you don’t know what to say or ask for.

You should get a copy of the procedural safeguards. They will give them to you at every meeting. Read through them, and use them! The district is required to do certain things and if they do not, you can seek legal council, and/or ask for due process. Most of the time the school, teachers, therapists, etc, are all on your side and want to work with you to help your child. They are bound by budgets and laws, and due to this, sometimes can’t give us everything that we want for our children. Do remember though, that if the school district can’t provide it, there are plenty of other programs that may be able to.

I now know the feeling of sitting on both sides of the table at an IEP meeting. It is daunting to try to find the services for my children, without breaking the bank. I have only been able to navigate my way through because of my background in education. I can’t imagine how so many of you on this journey, find and obtain the services that your children need. My hope is that this will help those of you who are struggling to find what you need.

Please feel free to find me on Facebook, and message me with questions you have. If you can’t find the programs in your area, I can try to help.

– guest post by Jaime

Not Really a Special Need: Adopting a Child with Albinism

September 26, 2016 by nohandsbutours 0 Comments

No Hands But Ours is focusing on skin conditions this month. My son has albinism, but I hesitated to write our story. Heck, our dermatologist has discharged us. If my son ever has a suspicious mole or a serious burn, we’ll go back. Otherwise, I am capable of – the dermatologist pointed out – totally handling this skin condition on my own. It’s not that I have special training. For the most part, my son’s skin condition requires… nothing. Or at least nothing much different than what I already do with my four biological, fair-skinned children.

What does that entail on a daily basis?

Most mornings, I check the UV index online. There are UV monitors and even bracelets and sunscreen bottles that will change color and alert you to UV rays – but the online weather report serves just fine for us. If the UV index is below 3, then I do not think about my son’s skin for the rest of the day. Since we live quite far north, there are several months of the year when the UV index never goes above 2. If the UV index is 3 or above, then I make sure there is a bottle of sunscreen with me. If we are going to be outside for more than 10 minutes, I apply sunscreen approximately 15 minutes before we walk out the door. I only apply sunscreen on parts of my son’s body that will be exposed to sunlight – in other words, parts not covered by clothing – and I don’t apply it at all if we are mostly going to be in the car or running errands in and out of shops. When we’re outdoors, I reapply sunscreen every 90 minutes.

That’s it.

Admittedly, we’re not a big beach, sailing, Disney, etc. family. Plenty of people with albinism (PWAs) live or vacation in sunnier climates more than we do, however, without any problem. It’s simply a matter of being vigilant. UV-protective clothing and beach tents also help.

Right now, my son cannot be responsible for his own skin care, so we apply the sunscreen for him. At school, his teachers ensure that he has sunscreen as per his IEP. Happily, my son has not yet had a burn. Many PWAs have a story of a rebellious phase when they stopped being careful about sunscreen – and of one painful burn that convinced them that their parents knew best. One burn is not a disaster.

No matter what the UV index is, my son wears sunglasses and a hat with a large brim if we go out. The hat is good to protect his scalp, but mostly it is to protect his eyes. Photophobia (extreme light sensitivity) almost always accompanies albinism, and our son is no exception. We have prescription sunglasses, and also prescription indoor glasses with a 20% tint. My son is four years old and doesn’t have a lot of “self-care” skills. He learned very quickly, however, to find and put on his hat and glasses when the light is bothering him. In my humble opinion, little kids are always super cute in eyeglasses!


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This month’s focus is on skin conditions, but I would be remiss if I didn’t mention that all people with albinism also have some degree of visual impairment. (I wasn’t fully aware of that when we checked “albinism” on our agency’s SN checklist, so maybe you didn’t know either!) In a nutshell: vision issues result from a lack of pigment in the retina and abnormal development of the optic nerve.

Nearly all PWAs also have nystagmus (involuntary eye movements). The degree of visual impairment varies greatly from one person to another. Our son’s visual impairment has been more of an issue than the skin condition, but that isn’t saying much.

So far, my son’s VI doesn’t really affect us on a day-to-day basis at all. Once or twice a month a wonderful teacher for the visually impaired (TVI) visits my son at home or at school. She has good tips but, honestly, it’s mostly common sense. My son is more likely to scribble (it’s “pre-literacy mark making”, people!) if he is offered chunky markers than if he’s given pencils that make faint lines. As we are teaching our son to feed himself, it’s better to spread the Cheerios on a dark-colored napkin than to camouflage them on a cheery yellow plate. When we choose board books, we look for ones with simple, uncluttered pictures. Our son is far from learning to read, but if and when he gets there (God willing), he will need enlarged type and probably a slant board and/or magnifier.

Since my son is nonverbal right now, it’s hard to determine exactly how much he can see. He is probably legally blind. That doesn’t stop him. He walks, runs and climbs as well as any four year old. Even in new surroundings, he rarely trips or bumps into anything. We think he has sonar! Chances are that he will never be able to get a driver’s license. The issue seems abstract now, but I can imagine that it is hard for a teen with albinism to watch his friends go through that rite of passage without him. Even before that stage, though, my son might be one of the kids who are embarrassed by his Elsa-white hair and insist on dying it.

As with any visible difference, there is the risk of teasing or outright bullying. On that front, our family’s experience has been relatively easy so far. People in our child’s province ranged from curious to cautious about albinism (no, it is not contagious!), but no one was unkind to us.

Now that we’re home, we’re living in a very diverse community, and people rarely even notice our son’s unique coloring. We have had some ignorant comments and questions. (Yes, his hair color is natural. No, I shouldn’t insist that he take off his sunglasses indoors. Yes, he is really Chinese!) Happily, they all seem to go right over my son’s head. Adult PWA have told me that even in the U.S. it can be hard to grow up looking different, and our family talks often about how beautiful albinism is. Most people seem to agree!


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Adult PWA and other parents have been amazingly willing to share their stories and advice. Most have emphasized to me that albinism is not a handicap that will limit my son’s life in any significant way. Professional baseball might not be an attainable goal, given his VI and depth-perception issues, but albinism will not stop him from being a doctor, lawyer, marathon runner…

Please know that if you are considering adopting a child with albinism, you have a whole community of people who are ready to support and reassure you. Some resources are below.

Several types of albinism exist, including one that involves a rare bleeding disorder (Hermansky Pudlak Syndrome). Thankfully, my son has not had any unusual bruising or bleeding, and we have not done genetic testing to determine the exact type of albinism he has.

My son has white hair, white skin and blue eyes. (No, people with albinism do not have red eyes, although they may seem red in certain lighting because you can perceive the blood vessels.) It is fairly certain that he has OCA1. OCA stands for oculocutaneous albinism, meaning both my son’s eyes (that’s the « O ») and skin (the « C ») lack pigment. Children with other forms of albinism may have reddish or light brown hair, and may have some skin pigment. There are also forms of albinism that affects only the person’s eyes (OA), although that is unlikely to be diagnosed in a waiting child.

When we were reviewing our son’s adoption file, I brought it to our much-trusted pediatrician. Albinism is fairly rare – approximately one in 18,000 people in the U.S. are born with this inherited, genetic condition – but our pediatrician actually had some experience with it. He shrugged. This is not a Special Need, he told me. It’s a Social Need. Our son’s real needs, as our pediatrician wisely predicted, are all adoption-related and, sadly, go much deeper than his skin.

Resources

NOAH (the National Organization for Albinism and Hypopigmentation) has a wealth of information for parents, as well as conference calls (including some aimed specifically at adoptive parents) and an annual conference.

Albinism Community is a large Facebook group for people with albinism and their families.

Albinism Adoptive Families is a Facebook group for families who have adopted, or are in process to adopt, a child with albinism.

For families considering this special need: the Prospective Albinism Adoptive Families Facebook group is a great place to start.

“What Can I See” on YouTube is a wonderful video for understanding the VI aspect of albinism.

Love Without Boundaries also has a super video, which I watched a ridiculous number of times when I was waiting for our son.

– guest post by Jennifer

Making the Grade: High Fives and Fist Bumps Instead of Hugs, Please

September 25, 2016 by nohandsbutours 0 Comments

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I still remember her. She was the best. My 1st grade self loved her big smile and her early 80s old-lady perm. Everyday, she’d stand by the classroom door at the end of the day and hug each and every one of us. I was excited to go to school everyday because of her and her …Read More

Child Who Waits: Moses

September 24, 2016 by nohandsbutours 0 Comments

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Look at tiny sweet Moses and fall in love! Born in September of 2014, Moses is just less than 18 months old. How he needs a mama to love him! Moses is described as a playful little guy who loves to interact with his caregivers. He likes to make sounds and call to different people …Read More

Making the Grade: Choosing a Classical Approach

September 23, 2016 by nohandsbutours 0 Comments

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Our decision to homeschool began like many other families’ journeys, I’m sure. We wanted to give our children a Biblical worldview, be a bigger part of their lives (no parents ever regret spending too much time with their children!), and have the freedom to choose our studies based on individual interests. We also hoped to …Read More

Find My Family: Alexa

September 22, 2016 by nohandsbutours 0 Comments

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Meet Alexa! Alex was born in October 2003 and is almost 13 years old. She loves dressing up and is an exceptional artist. Alexa has many good friends at school. Alexa’s caregivers wish is for her to find a loving family who can help her reach her full potential. Alexa herself has expressed her desire …Read More

Waiting to be Chosen: Annabelle

September 21, 2016 by nohandsbutours 3 Comments

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Oh my. Meet Miss Annabelle. This sweet baby girl is just one year old, and new to the list at HIC. Annabelle came to the orphanage when she was nine months old, and was found to have Down syndrome, and a CHD (ASD – report is in her file). You can read more about Down …Read More

Our Red Thread of Hope: An Advocacy Success Story

September 21, 2016 by nohandsbutours 4 Comments

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The Chinese have an ancient proverb that says, “An invisible red thread connects those who are destined to meet regardless of time, place, or circumstances. The thread may stretch or tangle but will never break.” Back in July 2015, the Lord called our family out of the Ethiopia adoption program, where had waited for over …Read More

Urgent Aging Out Child: Victoria

September 20, 2016 by nohandsbutours 0 Comments

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Sweet 13-year-old Victoria was found at the age of three, but just now had an adoption file prepared. She is now available to be adopted thanks to a new orphanage partnership with Madison Adoption Associates. Victoria is a Hep B carrier, but is otherwise healthy. She has just under 7 months to find a family …Read More

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The content found on the No Hands But Ours website is not approved, endorsed, curated or edited by medical professionals. Consult a doctor with expertise in the special needs of interest to you.