渡航報告:日本初のALPE FOUNDTIONを訪問 / Visiting Report : 1st journey to ALPE FOUNDATION from Japan

2017年1月2-4日の旅程で、ALPE FOUDNATION(スペイン・ヒホン)を日本人として初めて訪問し、軟骨無形成症に精通したドクターによるアセスメントを受けてきました。3歳7か月の我が子(当時)が受けた各アセスメントにおいて、同年代の軟骨無形成症の子どもたちにとって参考になることを祈念して報告します。

It was for the 1st time as Japanese visitors to visit Alpe Foundation (office: Gijón,Spain)  during 2nd-4th. Jan. 2017. We got doctors accesment specialized achondroplasia. Have just posted the story of  accesments of Eido, 3 yeas and 7 months at that time, in order to be good example for around same ages children with achondroplasia.

Fundación ALPE Acondroplasia


スペイン北部のヒホンという都市(アストリアス地方)に拠点を置く軟骨無形成症を専門に支援する団体。2000年、カーマン・アロンソ、ミガエル・ロペス、プレス・ルイスファミリーによって設立。ALPE FOUNDATIONは、年齢を問わず軟骨無形成症患者に対して、初期対応、教育機関への助言・支援、社会への適合、合併症等の再発に関する諸課題への「統合的なアプローチ」を施します。彼らが掲げる「統合的なアプローチ」とは、心身の発達向上や合併症予防に関わる診断や治療法を個別バラバラに考え、実施するのではなく、相関して考え実践するということです。「ALPE メソッド」は世界中の軟骨無形成症の子どもたちを診断するなかで、フィジカルセラピー、スピーチセラピー、オステオパシーなど様々な独自の方法論が開発されてきました。それらすべては、子どもたちの体力や適応力をより強く、よりバランスよく、ひいては様々な合併症を抑えることを目的としています。

APLE メソッドによる診断においては、驚くべきことに患者負担は発生せず、寄付などで賄われた事業予算を通じて無料で施されています。



ALPE Achondroplasia Foundation is based in Gijón, Asturias, North of Spain. It was funded in 2000 by Carmen Alonso, Miguel Lopez and the Press Lewis family. Now, the work done by the ALPE clinic is also supported by James Healey. The ALPE Foundation’s work has a holistic approach for children and adults with achondroplasia fully oriented to: meet early intervention needs, provide school support, assist with social integration, assist with the prevention of health problems that are recurrent in achondroplasia, improve physical and psychological development, promote research projects and methods to reduce health side effects, diagnosis and treatment of the achondroplasia. The ALPE method was developed to increase the global potential of children with achondroplasia.The child’s natural potential is improved with specifically developed techniques of physiotherapy, speech therapy, osteopathy and so on. All is done to increase each child’s capacities to feel stronger, more balanced and have a healthier life.

All the support and assessments provided by the ALPE clinic and the professionals that work for ALPE are free, funded through donations.




家族会会食・マジック・キングの演出/(ABBA HOTELラウンジ)


Special Invitation


Parents Meeting &Dinner / Magic Kings Performance (Lounge at ABBA HOTEL)

I met Carman Alonso again. Last time I met her was 7 months ago in Italy so she gave us a big hug and welcome. Despite the warm atmosphere, Eigo was so nervous meeting Spanish families thathe could not stop crying through the party.



10:30 カーマン・バレーアル 理学療法士

17:00 イバスタ医師(歯科)


10:00 バスカラン医師(オーディオロジー※)

12:00 レオン医師(小児科)

18:00 アルダマ医師(耳鼻科)

19:30 バレン・オジェダ スピーチセラピスト





10,30 Carmen Barreal, physiotherapist and osteopath, ALPE’s premises

17,00 Dr. Ibaseta, orthodoncist, Calle Corrida


10:00 Dr. Bascarán, audiologist, CalleNavia

12,00 Dr. León, pediatrician, ALPE’s premises

18,00 Dr. Aldama, otolaryngologist, CalleMarqués de San Esteban

19,30 Belén Ojeda, speechtherapist, ALPE’s premises

アセスメントの報告  A photo report from the assessments 



The physiotherapist undertook various measurements of Eigo´s body sections.

脊柱側弯の程度を計測 / Assessment for possible scoliosis




・Practice walking, supporting body straight on one leg, walking up and down steps while keeping the waist steady.

・Take part in physiotherapy, osteopathy, water therapy, and try age appropriate sports.

Excerptions of his measurement

計測 Measurements 03-01-2017(cm)
仰臥位(仰向け)身長 Supine decubitus 77.5
頭囲 Head circumference


大腿骨 Femur 13-13
頸骨 Tibia 13.5-13.5
足(踵から爪先) Foot 13-13
上腕骨 Humerus 11-11
尺骨 Ulna 11.5-11.5
Hand 9-9
体重 Weight 11.6kg

歯科 / Dentistry


Eigo had his teeth alignment, jaw structure and position of his tongue checked.


Close-up photo to assess teeth and tongue position

X線の写真を撮影しました。He had an X-ray Photo taken.




・Eigo’s tongue pushes his lower teeth and his lower jaw has been moving forward. Therefore when he chews, the upper teeth and lower teeth make contact and he gets bad teeth engagement.

・It is possible to have orthodontics in the future, but meanwhile it is a good idea to get advice from a speech therapist about what he can do now.

オーディオロジー / Audiology




External ear channel endoscopy – assessing the position of the grommets


聴力検査 / Audiometry assessment


They are testing Eigo’s hearing ability while he is awake.






・There are no problems with internal ear hearing.

・On the other hand, he has a slight problem of hearing with low-frequency sound because of the tubes in his ears; however, hearing will normallyimprove when having the grommets taken out.

・Use ear caps during showers and swimming to prevent the grommets falling out or developing a middle ear infection.


小児科 / Pediatric





We got a report with detail of hearing result and his suggestion.

Paediatrician REPORT (Summary)




・Try homeopathy treatment to improve fundamental immunity and to prevent respiratory infections during autumn and winter.

・Follow Eigo’s growth through the growth and development graphic chart of Achondroplasia.

・Have general exams get done one month before handand bring the result with you next time.


耳鼻科 / ENT


ENT doctor observed the ear canal and the throat (tonsils and adenoids included).

ENT Suggestions




・They recommend patients with achondroplasia to do nasal gargle using saline. It is not just to take antigen of allergens away but for making their breathing better.

・To have a nasal gargle, pour less than 2.5 ml saline horizontally and slowly into each nostril using a tube / syringe.

・In most of the cases by doing nasal gargles using saline, we can get better results with breathing and avoid the need for any operations of the adenoid.

スピーチセラピー/ Speech Therapy


The speech therapist showed lips and tongue exercises to improve internal oral position of the tongue. The brief reports of the assessments which the therapies applied is here.













Due to the physical characteristics of Achondroplasia, it is recommended to work in a functional way the different parts that make up the speech system:

  • Work facial gesticulation, exercising the muscles of the face.
  • Perform activities in the mirror. Start fixing the gaze, prolong the periods of attention
  • Lip movements to have a higher elasticity in this area. As well as a higher control of jaw movements.
  • Perform tongue movements to develop the muscle tone necessary for the control of the tongue and to avoid an incorrect position of the tongue. Avoid pressure on the teeth and / or the jaw.
  • Work breathing, expanding the thoracic capacity and maintaining a correct nasal breathing.
  • Start blowing, for example with a box with different wind instruments with different nozzles, to adapt the mouth and lips to different surfaces increasing the strength and control of the area, as well as air regulation.
  • Speak correctly, avoiding the use of diminutives

The time to work these exercises will gradually increase according to Eigo’s abilities, so that he performs correctly the movements and integrates them.

It is important to remember that the movements of lips should be opposite, tightening the area to work and then relaxing it, as well as exercising the jaw movement. The tongue movements will be performed without moving the jaw, thus ensuring that the muscle is toned and its control, once acquired, will work in a correct position.



私の初めてのスペイン渡航、そして、軟骨無形成症支援団体ALPE FOUNDATIONが施す無償アセスメント支援プログラムが終了しました。渡航の7か月前、イタリアのリミニで、カーマン・アロンソ、イネス・アルブスより聞いた、ALPEの功績や手かげるプログラムに関する話を聞き、どこか現実離れした感覚を拭い去れませんでした。今回のアセスメントを通して、その夢のような感覚が現実であるという確信を持つことができました。

Finally, our first journey to Spain and free assessment program by ALPE FOUDNATION- supporting organization for ACH has ended. When I got the information regarding ALPE’ successes and works from Carmen Alonso and Ines Alves about 7months before this journey, I felt like I was in a dream world. However, after all my experiences through this program, now I can say that this is real, not a dream.


ALPE have given free assessments to lots of patients. There are lots of photos of parents with ACH and their families all over the wall of the office, and I feel an atmosphere of warm bonds in each of them. That feeling may be more appropriate like “watching affectionately as they grew up” rather than “making efforts with an earnest mind”.


In one of the ALPE’s works, they have re-use program; collecting children’s clothes for ACH and giving them with love to other ACH children. During this visit, Eigo was given about 10 items of clothes from ALPE. All of them fitted Eigo just right. The Jumper, sweaters, pants, all of them were altered to fit children with ACH. When I saw this, I could sense the experiences of the clothing’s previous owner, from the anxious feeling they must have had when trying to find the ‘right’ clothes for their child, followed by the delight of being able to adjust the clothes so that they fit their child just right. So I now feel that I would like to pass on our clothes to other children after some years in this way too.

海外から来た私たちに、そして、たった一度会っただけの私たちにこのような機会を強く推奨してれたカーマン、イネス・アルブス、アセスメントに当たったドクター陣、通訳に従事してくれたFani、ALPE FOUNDATIONのメンバーに心から感謝しています。

I really appreciate Carmen and Ines and those who have given me an opportunity to attend those sessions event hough we had met only once. Also, the doctors and therapists who have assisted Eigo and me, Fani the translator, and all of ALPE members.


Finally, I want to thank to my son for giving me a precious experience like this. Gijón is located 11,000 km from Japan .It was not a familiar place to me, so probably I would not have gone there if Eigo was not born. On the way there, it was a really tough and long journey carrying a big bag and stroller with me as we travelled. Those remarkable experiences would not have happened without Eigo.

マドリードから5時間の高速鉄道を経て、ヒホン目前としたオビエドの山頂からアストリアスの大地を眺めていた際、夢のような現実の真意をあと一歩で確かめることができるといったワクワク感を覚え、不思議な躍動感に満ちたことを記憶しています。どこか、幼い頃に見た映画「ネバー・エンディング・ストーリー」が思い出され、我が子が、険しい谷や山や広い海を、超えどこまでも連れて行ってくれるファルコンのように感じられたものでした。あの映画のエンディングのように、童心に戻って多くの願いを心に抱き、それを叶えようと体現していく試みこそGlory to Achondroplasiaの具現化そのものであるといえましょう。

After five hours of on the high speed train from Madrid, I stood on the top of Mount Oviedo, the last stop before Gijon and looked down over the land below. While I was there, I became excited, feeling that we would so on be able to find out about the truth, like a dream, and I felt a strange type of excitement. Somehow I remembered the movie “The Never Ending Story” which I watched in my childhood. I felt that my son was like Falcon, a dragon which could carry me over steep valleys, mountains and enormous seas. I would like to believe that going back to this childhood memory with a pure heart, having lots of wishes in our minds and trying to achieve wishes, just like in this movie story, would be realization of Glory to Achondroplasia itself.

スペインへの渡航は、私をGlory to Achondroplasia立ち上げ時の初心に戻らせると共に、ひとつ壁を超えることのできたそんな貴重な経験の集大成であったと自負しています。

The journey to Spain reminded me of the spirit I had when I launched Glory to Achondroplasia. It was a big event made up of many precious experiences that allowed me to overcome a variety of obstacles.

Source (bottom of 3 pics) : The movie “Never Ending Story”