Daichi's Journey

Daichi's Journey

My son, Daichi is a 4 year old boy. When he was just 1 year old, he was diagnosed with global developmental delay along with hypotonia of his muscles (low muscle tone). Daichi has been unable to speak with meaningful words, nor can he express his intentions at this point in life. He cannot walk without support. He can only crawl as mode of transportation. 

We are in need of financial resources to help cover Daichi’s medical expenses and provide him with training so that he can walk and speak someday.

Despite series of MRIs and DNA tests, there have been no reasons or causes to be found to explain such a significant delay.  No matter how many different specialists we went to see, there was no clear answer to his condition. We are always told that the best thing we can do for him is to give him therapies and continue his daily trainings at home.

As soon as he was diagnosed, my husband and I started outpatient therapies and home training. We have been continuing the therapies and the daily home training for over 3 years and I really appreciate the doctors and the therapists have worked so hard for him, however there has been significant delay in reaching developmental milestones. His doctors are puzzled about this unusual and unexpected slow speed of his growth rate.
Sadly, even after he turned 3, we could not see any substantial progress in his growth. From then on, I strongly felt the need of identifying the cause of his delay as well as finding means of effective approach to therapy or training. Even though we were taking Daichi to hospitals or therapeutic facilities almost daily, he hasn't responded to any treatment or therapy.  We could not help but feel that we are at the end of our resources, as if we are at a stalemate.

Around that time, a friend of ours introduced us to an institution called The Family Hope Center. My friend told us that her friend has been participating a program called scent therapy for sensory stimulation, developed by The Family Hope Center. Since it was an approach that we were unheard-of, we were eager to learn more about this Family Hope Center.

The Family Hope Center is an international center dedicated to the development of children with special needs and developmental delays. It is headquartered in Norristown, PA. The Family Hope Center utilizes both neurological and physical approach to healing the origins of injury in the human brain. Their approach guides parents through an understanding of the complex brain, emphasizing practical ways they can improve their child's quality of life.

What made us interested to this program was that they don’t focus on the symptoms (cannot walk or talk) alone; rather, they examine the main cause of the child’s developmental difficulty and treat the brain. We were fascinated by The Family Hope Center’s approach to focus on stimulating injured-brain by providing therapy-trainings such as proper crawling-creeping, picture cards, scent therapy and so on.

Most importantly, our biggest reason (determination factor) to pursue this program was that The Family Hope Center regularly offers their special 3-day parent training conference where they work hand-in-hand with parents like us to learn their methods of therapies, routines and exercises that helps parents work smarter for their children, not harder. It was also assuring that The Family Hope Center’s entire clinical team offers their follow-up 2-day assessment to create a specific program designed to help each child to improve the symptoms and overcome their challenges.

We took the courage to sign up for the Parent Training and attended the whole three days to participate the training in June 2017. We learned to understand the scientific approach to child brain development, and our child's neurology by using measurable index. We also learned the training method to enhance the child’s intellectual, physical, sensory, auditory, emotional and social skills during this parent training conference.

The follow-up 2-day assessment occurs every 6 months for each family to revisit the Family Hope Center. Daichi and I flew to Philadelphia and returned to The Family Hope Center in October 2017 to attend the follow up 2-day assessment.

Daichi’s individually customized training plans requires entire family’s involvement. His daily training plan takes about 4 to 5 hours every day to complete.   Besides this training, we also need to take Daichi to Cincinnati Children’s Medical Center for his outpatients’ visits and therapy sessions. Approximate hours that our family spends for Daichi’s medical and therapeutic needs are 30 to 40 hour every week. Other than those hours, I also spend a large number of hours battling and negotiating with our health insurance company and billing departments of all the hospitals that Daichi receives care.

It has been 6 months since we started to participate in this program. We have noticed recently that Daichi’s crawling speed has improved, and his trunk seems to become stronger. He finally started babbling and become more vocal than ever before.  Sometimes, he produces the sounds that are nearly imitating other people. This is the first time as mom and dad to feel that Daichi has been growing developmentally. It was amazing how much progress he has made since we came back from the Parent Training conference.

One day, it caught us by surprise when Daichi said, 「お兄ちゃんおいでー」” Come here Bro” in Japanese. It was his very first time for Daichi to voice meaningful words in his life. He was 3 year and 10months old that day. I simply could not stop crying with joy.

We also noticed his progress was also reflected in to the most recent Developmental Screening and Assessment in all area (taken at DDBP - Division of Developmental and Behavioral Pediatrics in Cincinnati Children’s Medical Center). 
For this reason, my husband and I have determined to continue this family Hope Center’s program as long as we could afford. 

Since Daichi was born in Japan and he is not an American citizen, he is not eligible to receive any federal assistance such as Medicaid or Social Security Disability Insurance (SSDI). Without Medicaid or SSDI, vast sums were consumed in Daichi’s medical and therapy expenses.  In addition to this issue, we have nobody to watch our sons other than myself. Just like many foreigners, we have no family or relatives to ask for help in this country. As mother of Daichi, majority of time I spend in my daily life is to care for Daichi and give him as much training as I possibly can. For this reason, there is not enough time for me to work to make extra earning for the household.

Yet, we have determination to try everything that will or might help Daichi, however no matter how badly we want to provide Daichi the best possible treatment, this financial burden has created our anxiety. The programs provided by Family Hope Center’s program is not covered by our health insurance plan, not even part of it. For us to participate in their training, we need to bear the full expenses as self-paid. The costs include travel expenses such flight, transportation, hotel and food) and interpreter service cost besides the program itself.

On the top of these expenses, we were notified by our health insurance that they will no longer cover Aquatic Therapy. Aquatic Therapy was one of few things that we could see the visible effect in Daichi, so it was devastating to find out we must somehow find a way to afford his Aquatic Therapy. I made numerous phone calls to our health insurance to appeal, however nothing was approved.

One of Daichi’s Aquatic therapy sessions was our first time to witness our son, rising from his chair with only his own strength in a medical swimming pool. His therapist also agreed that Aquatic therapy approach suits him very well with his needs to learn how to stand and walk eventually.

For all these reason, I cannot let any opportunities slip. Any opportunities that helps Daichi grow strong to stand and walk cannot be missed.  If there are any methods that helps Daichi to learn how to speak meaningful words, we as his parents cannot let go of those possibilities. 

If in any way possible, I would love to continue both the Family Hope Center’s program and his Aquatic Therapy sessions for the maximum result.

We are starting this fundraiser to help with many added expenses. For us to be able to continue his training and therapy, we humbly ask for you to help us raise $19,000 USD.

Here is the estimated price break down of expenses: 

·         Family Hope Center clinical examination and training fee:  $4,000/visit × 2 visits

(planning 2 visits on March and August in 2018 = $8,000)

·         Expenses during these visits:  $2,000 /visit

(air travel $600 + hotel $500 + interpreter service fee  $900 ×2 visits = $4,000 )

·         Aquatic Therapy $300 /per visit ×24 sessions = $7,200 

Your donations will cover medical, therapy and training expenses, including the travel costs as well as Aquatic Therapy.  We appreciate your continued prayers and support for Daichi and our family.

We want Daichi to find out the joy of moving on his own. We want Daichi to discover the joy of convening his thoughts and feeling to others someday…  To make this come true, our family will make every effort to provide his specific training needs.

Daichi’s condition has taught us how precious it is to be able to run and chase a sibling or friends.  Daichi’s brother sometimes asks, “Mom, can I play tag with Daichi someday?” He is a wonderful brother to Daichi; he is always at Daichi’s side to help his little brother. As their parents, we dream more than anything about the day that they run together and chase each other, playing with a lot of laughter.

We his family: mother, father and brother, believe in people’s kindness, science, and miracles. We'll be grateful for any contribution to support Daichi’s medical expenses.

We do not know what Daichi’s future holds, but we plan to give him the best possible life through all of our ups and downs. He is absolutely adored by all the therapists and everyone who meets him. There is something about Daichi that makes people smile.

We'll update you once we have the final diagnosis and keep you informed about his condition and progress of our son.

Thank you for opening your hearts to our beloved family.





その事を相談していた友人からFamily Hope Centerのことを教えていただきました。調べていくと同センターのプログラムによって脳損傷など障害を持った子供に大きな成果が出ている事例があるということを知りました。


Family Hope Centerは特別な支援が必要なお子さんや発達遅延のあるお子さんの発達について研究指導をしている国際的施設でペンシルベニア州のNorristownに拠点があります。同センターは脳損傷治癒のための神経学的なアプローチを提唱しています。両親が脳の仕組みや働きを理解した


Family Hope Centerのプログラムでは、初めに3日間かけて両親を対象としたセミナーを受ける必要があります。ここでは、脳についての解説やセンター独自の発達程度を測るチャート、トレーニングについての考え方、トレーニング方法の概要などの説明があります。




誰かが「バイバイ」といったら「バ、バ」というように人が言った言葉をまねる様子も少しずつ見られるようになりました。また、突然「おにいちゃんおいでー」と言った日は嬉しくて涙が止まりませんでした。大知が3歳10ヶ月のとき、それが彼のはじめての言葉です。それ以来意味のあるはっきりとしたが安定して出ることはありませんが、大知も話せるようになる可能性がある、このトレーニングを続けていけば今後さらに成長できるのではないか、と感じています。これまで非常にゆっくりとした成長で大きな変化を感じられなかったのに対し、Family Hope Centerのプログラムを始めて以来、驚かされるくらい次々と成長が感じられています。


私達はFamily Hope Centerのプログラムが大知にとって非常に効果的であると感じ、彼の可能性を引き出していくためにも、今後も定期的に診察を受け、このプログラムを続けていきたいと思っています。


一方で、大知は日本で生まれ、アメリカ市民でないため、MedicaidやSSDI(Social Security Disability Insurance)など医療費の補助を受けられず、医療費、セラピー費用、車椅子や歩行器などの医療機器費用などがかなり嵩んできています。頼る家族や親戚が近くにいない中、大知に最大限のトレーニングや治療を受けさせるためには、母が働くだけの時間が残されていないのが現状です。


Family Hope Centerのプログラムは、保険が適用されず、全額自己負担となり、遠方のため旅費、滞在費、通訳費用などもかかります。大知によりよい治療を受けさせてあげたいという強い思いはあるものの、経済的な不安を抱えるようになりました。

 更に、良い効果が見られていたAquatic Therapy(プールでのセラピー)も保険が適用されないことがされない旨通知を受けました。保険会社には何度も電話をかけ、一部でも適用されないかと訴えてきましたが、承認が降りず、1回45分間のセラピーに約300ドルかかるため、経済的理由で通わせるのを諦めている状態です。

Aquatic Therapyでは、水中ではあるものの、大知が初めて自分の力だけで椅子から立つことができました。セラピストからもこの セラピーは彼に合っていて非常に効果的だと言われました。このセラピーは医療用プールで行われ、水温が高めに設定されているため、筋肉が収縮せず、よりリラックスした状態でトレーニングできます。機材なども充実しており、一般のプールでトレーニングできないかと試しましたが、セラピーと同じトレーニングをすることは難しいと分かりました。


大知の成長の機会を逃したくない、そして、大知の成長を最大限促すため、今後もFamily Hope CenterのプログラムとAquatic Therapyも続けさせてあげたいと思っています。




·         Family Hope Center 診察費用:USD 4,000/visit ×2回(2018年3月と9月頃を予定)=USD8,000

·         経費:USD2,000/visit(旅費USD600+滞在費USD500+通訳費USD900) ×2回           =USD4,000

·         Aquatic Therapy費用:USD300/visit ×24回                                                                                =USD7,200

病院の検査結果で脳や遺伝子に異常がみつからなかったことは両親としてはもどかしく感じますが、彼にはこれから成長していく可能性や希望もあると信じています。ただ、その成長が大きく遅れているのは事実であり、効果的な手段で彼の成長を促してあげる必要があります。彼の成長には、今、Family Hope CenterのプログラムとAquatic Therapyで継続的に刺激やトレーニングしていく必要があるだと思います。そのための資金をご支援頂けないかと思っております。






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Fumie Kume 
Florence, KY