Living with one of the World's Rarest Syndromes (The Story of Sweet P)

Special Books by Special Kids
9 May 202424:04

TLDRThe video transcript tells the heartwarming story of P, a 14-year-old girl living with a rare genetic condition known as MOPD Type CENPJ, of which she is the only known case. P's adoptive parents share their journey of adopting P from an orphanage in India, a process that took over five years. They discuss the challenges P faces due to her condition and the trauma of her early life, as well as the joy and love they share as a family. P's personality shines through as she expresses her love for her dad, her enjoyment of playful and imaginative activities, and her desire for friendship. The family's hope for P's future is for her to feel safe, loved, and accepted. The transcript also highlights the importance of understanding and inclusion for children with special needs.

Takeaways

  • πŸ‘§ P is a 14-year-old girl with a rare syndrome, MOPD Type CENPJ, and is one of only about 250 children worldwide with MOPD.
  • πŸ’¬ P has difficulty communicating verbally but uses a device to help express herself and enjoys simple phrases like "Hello" and "Ahnana".
  • πŸ€— P's dad describes being her father as one of the most awesome things in the world, cherishing moments like when she reads to him.
  • πŸ‘¨β€πŸ‘§ P's relationship with her dad is playful and imaginative; they enjoy activities like hiking and pretending, which fosters her sense of humor and creativity.
  • 🌟 P's parents are committed to providing her with a loving and safe environment, helping her overcome the trauma from her early years in an orphanage.
  • πŸ“š P's mom is her homeschool teacher, and they cover a wide range of subjects, indicating P's cognitive abilities despite her challenges.
  • πŸ• P loves animals, particularly her dog Mason, and enjoys sharing her affection for pets with others.
  • πŸŽ’ P has a backpack from the "We Carry Kevan" organization, which allows her to go on adventures with her dad, highlighting her physical limitations but also her ability to participate in activities.
  • πŸ€” P's parents are aware of the challenges she faces in social situations due to her syndrome and work on helping her fit in while also celebrating her uniqueness.
  • πŸ‘« P's parents encourage other parents to teach their children to be friends with P, emphasizing that she is like any other kid on the inside.
  • 🌈 The family has a lot of inside jokes and special moments that outsiders might not understand, reflecting the depth of their bond and P's intelligence.

Q & A

  • How old is P at the time of the interview?

    -P is 14 years old at the time of the interview.

  • What is P's relationship with her father like?

    -P has a very close and loving relationship with her father. She is a daddy's girl, and her father describes being her dad as one of the most awesome things in the world.

  • What is the significance of the word 'Ahnana'?

    -'Ahnana' is a sound that P makes when she wants to play with kids. It's a part of her unique way of interacting and having fun.

  • What challenges does P face in making friends with children her age?

    -As P grows older, it becomes more difficult for her to make friends with children her age because they do not understand why she says 'Ahnana' and they can't understand the words she says.

  • How did P's parents meet her?

    -P's parents met her during a missions trip in India at a special needs orphanage. She was 2 years old and weighed seven pounds at the time.

  • What is P's favorite activity with her dad?

    -P's favorite activity with her dad is going on hikes with her backpack, where they pretend to look for giants.

  • What is MOPD and what does it stand for?

    -MOPD stands for microcephalic osteodysplastic primordial dwarfism. It is a very rare condition that affects growth and development, and P has her own unique type, Type CENPJ, which is identified by the CENPJ gene.

  • How does P's mother help with her education?

    -P's mother has been her primary homeschool teacher, teaching her how to read and covering a wide range of subjects.

  • What are some of the things that make P happy?

    -Some of the things that make P happy include puppy dogs, her dog Mason, and the character Elmo.

  • What is P's parents' biggest hope for her future?

    -P's parents' biggest hope for her future is that she is at peace, knowing that she is loved, safe, and accepted.

  • How does P's father describe her intelligence?

    -P's father describes her as cognitively smarter than many people realize, but she has a difficult time expressing her intelligence, which makes it hard for others to understand her depth.

Outlines

00:00

πŸ˜€ Getting to Know P and Her Father's Love

The first paragraph introduces an interview with P, a 14-year-old girl, and her father, Chris. They engage in a light-hearted conversation where P confirms her age and expresses her love for her dad. Chris shares his feelings about being P's father, describing it as an awesome experience to watch her grow. P uses a device to communicate, and they discuss how to make friends and be silly together. The paragraph ends with a playful interaction and a mention of P's unique way of playing, 'Ahnana,' which her older playmates no longer engage in, causing her sadness.

05:01

🧳 Fond Memories and Playfulness

In the second paragraph, the family reminisces about meeting P during a mission trip in India, where she was in a special needs orphanage. They recall her tiny size and how quickly she won their hearts. P's favorite activity with her dad is going on hikes while she rides in a backpack. The paragraph also highlights P's imaginative play, as they engage in pretend play, acting out scenarios like being giants and cows. The parents discuss P's love for playful and imaginative activities, her sense of humor, and the joy they find in their unique father-daughter relationship.

10:02

🧬 P's Medical Condition and Adoption Journey

The third paragraph delves into P's medical diagnoses, MOPD (Microcephalic Osseous Primordial Dwarfism) with a unique Type CENPJ gene. P's parents discuss the rarity of her condition and the long journey to adopt her, which took over five years. They also talk about the challenges P faces due to her time in the orphanage, including trauma and difficulty in feeling safe and loved. The family's faith and commitment to providing P with a loving home are emphasized, as well as their efforts to help P overcome her past experiences.

15:02

πŸ“š P's Education and Family Dynamics

The fourth paragraph focuses on P's homeschooling and the role her mother plays as her teacher. P's mother discusses the breadth of topics they cover and P's enthusiasm for learning. The family shares their inside jokes and the joy they find in P's unique sense of humor and observations. They also talk about P's love for her dog Mason, her stuffed animal Elmo, and the special moments they share, like snailing, which is a playful high-five gesture. The paragraph concludes with a reflection on P's cognitive abilities and the challenges she faces in expressing her intelligence to others.

20:03

🌟 Hopes and Advice for Inclusion

In the final paragraph, the family shares their hopes for P's future, which center around her feeling loved, safe, and accepted. They provide advice for other parents on how to teach their children to be friends with P, emphasizing that she is like any other child who enjoys playing and having fun. The paragraph includes playful interactions, such as pretending to be dinosaurs and playing hide and seek. The family's desire for P to have a peaceful and fulfilling life is evident, as well as their commitment to fostering an inclusive environment for her.

Mindmap

Keywords

πŸ’‘Syndrome

A syndrome is a group of signs and symptoms that occur together and characterize a particular condition or disease. In the context of the video, the term refers to the rare medical condition that the individual named P is living with, which significantly impacts her life and the lives of her family.

πŸ’‘Adoption

Adoption is the legal process of taking someone's children and raising them as one's own. It is a significant theme in the video as it describes the journey the family went through to adopt P from an orphanage in India, which took over five years and was a profound experience for them.

πŸ’‘Communication Device

A communication device is a tool or system that helps individuals with communication difficulties express themselves. In the video, P uses a device to communicate with others, as she has difficulty expressing her thoughts verbally. The device plays a crucial role in her interaction with her family and others.

πŸ’‘

πŸ’‘Imagination

Imagination refers to the faculty or action of forming new ideas or images or concepts of external objects not present to the senses. P is described as having an extraordinary imagination, which allows her to engage in imaginative play, such as pretending to be a giant or a dinosaur, which is a significant part of her interaction with her family.

πŸ’‘Trauma

Trauma is deeply distressing or disturbing experience that can have long-lasting effects on an individual's mental and emotional state. P's early years in an orphanage have resulted in trauma, which the family acknowledges and works through, aiming to replace difficult memories with positive ones.

πŸ’‘MOPD (Microcephalic Osseous Primordial Dwarfism)

MOPD is a very rare form of dwarfism characterized by small stature and a small head. P has a unique type of MOPD, Type CENPJ, which is caused by a mutation in the CENPJ gene. This diagnosis is significant as it shapes P's physical development and health needs.

πŸ’‘Friendship

Friendship is a close and supportive relationship between two people. The video emphasizes the importance of friendship in P's life, as she enjoys making friends and engaging in playful activities with them. Her family also discusses how others can become friends with P and the simplicity of the interaction needed.

πŸ’‘Homeschooling

Homeschooling is the education of children at home or a place other than a school under the direction of their parents or family members. P's mother has been her primary educator, teaching her a wide range of subjects and adapting to her unique learning needs.

πŸ’‘Inside Jokes

Inside jokes are humorous remarks or references that are understood only by a particular group of people. The video highlights the special bond between P and her family, which includes shared inside jokes like 'Ahnana' and 'Snailing,' which contribute to their close-knit relationship.

πŸ’‘Playfulness

Playfulness refers to the quality of being lighthearted and fun. P and her family engage in a lot of playful activities, which is a significant part of their bonding and a way to connect with P, who enjoys being silly and engaging in imaginative play.

πŸ’‘Acceptance

Acceptance is the action of receiving something willingly and without prejudice. The family's biggest hope for P's future is that she feels accepted, loved, and safe. This keyword is central to the family's values and their approach to raising P in a supportive and understanding environment.

Highlights

P is a 14-year-old girl living with a rare syndrome, and she is interviewed about her life.

P's father describes the joy of watching her grow and their special bond.

P communicates with a device and shares her desire for friendship.

P's father fondly recalls the first time he met P in India and how she captured his heart.

P's parents discuss the challenges of her rare condition, MOPD Type CENPJ, and its impact on her social interactions.

P's father shares his experience of adopting P from an orphanage in India, a process that took over five years.

P's mother has been her homeschool teacher, and they cover a wide range of subjects.

P expresses happiness with simple things like saying hello and making friends.

P's parents emphasize the importance of play and imagination in her life.

P's father talks about the difficulty of P's transition from an orphanage to her new home and the trauma she experienced.

P's mother explains how they are working to replace P's difficult memories with positive ones.

P's father shares his hope for P's future, focusing on her feeling loved, safe, and accepted.

P and her father engage in playful pretend games, showcasing their strong connection and shared joy.

P's parents discuss the importance of treating P like any other child and encouraging other children to play with her.

P's mother describes P's intelligence and the difficulty she has in expressing it due to her condition.

P's father shares a heartwarming story of P 'snailing' him, one of their many inside jokes.

P's parents express their wish for P to continue to grow up as their little girl, maintaining her childlike joy and humor.