Little LC's PKU Story

 Little LC was found in his stroller by the gate of a local orphanage in northern China at the end of January.  The orphanage medical team estimated his age as about 4 months old. 

LC was found with a small supply of special formula for babies with PKU.  Based on that, we guessed that he had been diagnosed with phenylketonuria (PKU).  This is a serious metabolic disorder in which a person is unable to break down the amino acid phenylalanine.  If left untreated phenylalanine can build up to toxic levels in the body, causing seizures, intellectual impairment and life-long health problems.  

The treatment for babies with PKU is a special low protein formula.  We can only guess that his birth family was unable to continue buying the special formula, or perhaps they were uncertain about his long-term prognosis.

LC’s orphanage asked us if we could help provide the special formula and care he needed, so he came straight to our home.  

We recently transferred him to our medical home in Beijing so that he could follow up with the top pediatric specialists.  They were able to tell us that he has a less severe case of PKU and his feedings can be mixed with a percentage of regular formula.

LC is a happy baby who loves cuddles and is very interested in watching the volunteers and older children.  He finds their antics quite humorous and laughs deep belly laughs whenever they are being silly… so now they delight in putting on a show just to hear the little guy break out in laughter. 

We're so grateful to you for supporting us in this work, and making it possible for us to provide loving, nurturing care to LC!

Made for Love - The Importance of the Ordinary

 When we think about child development, it is often the major milestones that come to mind, like first steps, first words, first day of preschool. 

However, the seemingly trivial everyday moments play an even more central role in shaping who a child is and who they become. We believe that everyday life matters, for example, family life, school, and extracurricular activities create abundant opportunities for the child’s socialization process and the development of higher psychological functions, such as problem solving and self-regulation. 

Children learn through daily interactions with the people around them. For many children, our family model of care is the very first and most important social environment where they learn practical skills that are indispensable in life. Watching and participating in daily chores like sweeping the floor, doing laundry, and grocery shopping teaches the child about self-care and responsibility. 

When a child helps prepare dinner, they practice fine motor skills, following instructions, time management, simple math, and teamwork. 

Participating in family life, school, and extracurricular activities supports children in their development of language and cognition. For young children, learning begins with concrete and tangible experiences. For example, the water-related activities in our Montessori classroom offers children abundant opportunities to experiment with abstract concepts like sinking and floating. A trip to the supermarket or grocery store is ideal for learning names of ingredients, colors, and quantity, and for having conversations about meal planning and nutrition. 

For our children, important adults in their lives (nannies, group home parents, and teachers) also play a critical role in shaping their emotional stability, social skills, and overall psychological well-being. An adult who responds instantaneously to a little one’s physical or emotional needs, who engages in play and storytelling, who comforts when the child feels hurt, help maintain trust and a sense of security. When an adult models communication, calmness, and empathy, the child learns how to express emotions and build relationships. 

Everyday life provides a rich setting for social and cultural awareness. A child’s sense of culture and society develops through simple activities—sharing a meal around a round table with family, offering tea with respect when guests visit, and visiting famous historical places. When children celebrate Chinese New Year with red lanterns, red envelopes from older generation, and dumpling-making and eating as a family, they learn, in a sensory-rich and tangible way, about traditions, values, and ways of thinking. Experiences like these shapes their cultural identity and a sense of belonging. 

It is the everyday routines, interactions, and relationships that shape a child’s development. Children are constantly learning, growing, and absorbing what is available in their near environment. In this process, they form their sense of self. By creating a rich and supportive environment, we want to ensure that every child has the opportunity to thrive, regardless of their background. 

Five years with little C

 

Baby C was a few weeks old when he was abandoned with multiple health concerns.  He was taken to the hospital for a short period in order to stabilize him and run further diagnostics.  The doctors soon realized that he had severe brain damage and epilepsy.  He was unable to eat on his own and would require skilled care.  His orphanage asked us if we would be able to accept him in our project for palliative care.

When we welcomed little C, we knew he would probably never walk or talk or learn any of the things a normally developing child would do.  Despite this, his nannies worked hard to provide him with the same loving interactions and high standard of care as the other children in his baby room.  He was treated with dignity because of who he was, and not what he was able to do or achieve.

C spent over 5 years in our care, and his condition continued to deteriorate as time went on.  His seizures became more intense.  He developed breathing difficulties and he began to require oxygen more frequently.  

He was also admitted to the hospital several times last year, though the doctors cautioned us that there really wasn’t much they could do for him except stabilize him enough to return home again… and again.  Finally, during his last hospitalization a few weeks ago he passed away.

We wish that we could have changed the ending of his story, but we are glad to have had those 5 years with him.  He will be missed by all who loved and cared for him!

A Very Cheerful Helper

J was about 8 months old when his orphanage asked us if we could help him. 

They wanted to confirm his diagnosis of Down Syndrome, and also suspected he had a heart defect.  J came to our Beijing home from his province and after visiting with specialists we were able to determine that he had no heart defect or other medical complications.  

He’s been in good health since then, but we are always monitoring for issues that are common in children with Down Syndrome.

Over the past eight years J has changed a lot, but one thing that has not changed is his deep curiosity about the world around him and his sunny, cheerful personality.  

His nannies agree he’s a real charmer and a fast learner. He loves to help out – any time there is a chore or a project to be done, he is right in the middle of it!  

Recently, he saw another child receiving therapy and he wanted to help.  He jumped right in and made himself useful!  We are always amazed at how much he understands and how dedicated he is to finishing a job that he starts, even when it's boring or he gets tired.

J is able to attend the special needs school inside the social welfare center, so his days are full and he’s always busy.

We are grateful to all who support us in our work.  You are helping us to make a difference for children like J, providing him with nurturing caregivers, a stimulating environment and developmentally appropriate opportunities for growth and education.  Thank you!

Made for Love - Creating Opportunities

Most of the children in our care have physical or intellectual impairments. Through our many years of working with them, we have come to realize how very important it is for adults to take initiatives and create opportunities for rich experiences for them, to organize play and to model social and cultural activities.  At the same time we must also maintain a sense of stability and security.

For a child with special needs, life can be full of challenges. As caring and supportive adults, one of the most powerful things we can do is to take the lead in creating enriching experiences that foster their growth, learning, and wellbeing. 

We do our best to provide a learning environment, both indoor and outdoors, where the children in our care have access to spontaneous interactions and learning moments. By organizing a vegetable garden, for example, we are opening up a world of new sights, sounds, scents and textures. The children get to help in the garden, feel the fresh vines of cucumbers, hear the rustle of corn leaves, and see vibrant colors in tomatoes. And when it's time to harvest we get to smell and taste the fruit of our labor!  It also creates abundant opportunities to learn concepts like “organic fertilizer”. These moments are not just enjoyable. They are crucial for their sensory, cognitive, and emotional development.  

Play is another main area where adults can make a significant impact. For the children in our care, play does not necessarily come easily or naturally. They often need help to understand how to engage with toys or how to interact playfully with peers. 

This is when adults come in for support. We teach the children play skills and communication skills by modelling, for example, building a tower with blocks, pretending to feed a doll with food made of Play-Doh. We also initiate ball-passing games with children to teach collaboration and turn taking.

Yet another key dimension that adults need to consciously lead is modeling social and cultural activities. Clear and consistent modeling can be incredibly helpful for the children we work with. Many children with intellectual impairment tend to struggle with reading social cues and social norms. By modeling simple social exchanges like greeting others, and knocking on the door before entering, adults pave the way for social development in the children. 

All of the above, of course, must be grounded in stability and security, which we provide by maintaining a routine, offering consistent support, and creating a nurturing environment as part of our job. This stability is not only useful for fostering a sense of safety, but it also helps build trust and confidence needed for the children to explore and engage with the world around them.

At the heart of it all, taking initiative as adults means being intentional in how we support the children. It’s about meeting them where they are, and helping them reach their full potential. Every experience, every play session, and every moment of connection counts. By doing this, we’re showing them that they are loved, valued, and capable.

Launchpad - Making Hua Mo 花馍

 For the young adults in our Launchpad program, discerning what vocational skills they are interested in pursuing is not an easy thing!  Of course there are careers that interest them, but these don't always line up with their strengths and abilities.  Eighteen year old YG has been pondering this question over the past months, and he has recently decided to try and improve his skills making "hua mo" 花馍 in the hopes that this might open doors to full time employment for him in the future.

What is hua mo 花馍, exactly?  We're glad you asked!  Steamed buns are a popular food in China, and hua mo are very intricately shaped and decorated steamed buns.  These can be made to represent flowers, dragons, birds, fish, people and other objects.  They are a specialty usually found in north China's, especially in Shanxi province - where YG lives.  They are especially popular at Chinese New Year and other traditional feasts and holidays.

YG began learning the art of making hua mo when he was still living in the orphanage.  Because he is dependent on his wheelchair for mobility, it was one of the few vocational training programs that he could participate in.  Here he shows us how he makes a very simple hua mo design - a rose.

He starts with a basic steamed bread recipe.  It's tricky knowing how stiff to make the dough... you don't want it too dry, or it will be tough and chewy, but you also don't want it too soft, or the intricate designs won't hold their shape.  

Then he works to cut and shape the various components of his design - in this case, the petals of the rose:

Here's a rose all ready for the steamer:

After steaming; it's ready to eat!

Hua mo can be decorated with fruit or nuts, and are often brightly colored.  YG is going to experiment with some of these embellishments in the future, and we look forward to sampling some more of his work!