[PR] Gain and Get More Likes and Followers on Instagram.

#pfeiffersyndrome

534 posts

TOP POSTS

One thing I love about Amelia’s Syndrome is that it’s brought so many amazing friends into our lives! 💜 #apertsyndrome #pfeiffersyndrome #ameliakatja @kelly.eggleston @averysstory #bestplaydate

What a difference a year makes! On this day last year I was just getting the page that my little Honey Badger was in her room in the PICU following her monobloc surgery. We were showered with amazing support from all of our friends and family. Thank you! #pfeiffersyndrome #moresharesfewerstares #cca #orangeforbravery #brAvery

A pensare che questa volta ce la siamo cavate con solo due settimane di ospedale ancora non mi sembra vero. Comunque, 13 mesi, 4 ricoveri, 4 interventi. #forzarebecca #littlewarrior #raredisorder #pfeiffersyndrome #love

Mata saya mengembun, dan kemudian jadi kabur oleh air mata, berkali-kali, setiap menjelajah isi Instagram ini

Sepasang suami istri yang rupawan, mapan, tinggal di Amerika, dan kemudian dianugerahi si unyu Bella, yang lahir dengan Pfeiffer Syndrom type 2 (low chance to "live" menurut dokter ). Dilahirkan dalam kondisi BUTA dan TULI, dengan kondisi langit2 mulut yang langka, terbelah berbentuk hati. Dia tak bisa menelan apapun, makan nya hanya bisa susu khusus dan disalurkan melalui selang yang disambungkan ke perutnya. Bella punya daun telinga yg normal, tapi tak memiliki lubang.

Tapi, Bella punya orangtua luarrrr biasa, yang tak kenal lelah berjuang, bedoa dan berikhtiar maksimal.

Sekitar umur 1 tahun, tiba2 ia bisa melihat sekitarnya. Inipun tak bisa dijelaskan oleh tim dokter yang menanganinya. Ini mukjizat, kata bunda Bella

Sekitar umur 2 tahun, Bella dipasang alat khusus yang bisa membuat dia " berbicara". Alat yg harusnya tdk bisa ia gunakan, karena secara medis itu tdk mungkin, karena tak ada udara yg bisa keluar masuk dari tenggorokannya

Meski divonis tuli, tapi bella bisa ikut shalawatan mengikuti lagu Maher Zein yang diputar di tape.. How come ?? Lagi-lagi, jawabannya cuma 1, kebesaran Allah.. Selain terkena Pfeiffer Syindrom, Bella juga didiagnosa Sleep Apnea apaaaa gitu(rumit istilah nya). Jadi saat tidur, otak kecil Bella lupa memerintahkan paru-paru nya untuk bernapas. Bella hanya bernapas 2-3x dalam semenit, bahkan pernah juga selama 70 detik, bella tidak bernapas sama sekali. Karena itulah, saat tidur bella pake ventilator.

Dan masih banyak lagi yang lainnya

Kalau kita sering kesal sama tingkah laku anak kita, ga sabaran, kurang qonaah sama kekurangan anak kita, bisa sesekali berkunjung ke instagram beliau. Seketika kita akan langsung malu sekali

Malu pada rasa syukur dari kedua orangtua Bella atas putri mereka, memaksimalkan ikhtiar pengobatan dan tetap bangga dengan putri cantik mereka.. Seperti yang sering saya katakan "Setiap Keluarga Punya Air Mata nya sendiri"

Dari: Pondok Al Fatin
(opinibangsa.id)
#pfeiffersyndrome #sleepapnea

➡️Pfeiffer sindromu
➡️Pfeiffer syndrome.➡️Синдром Пфайффера.➡️
This is a sad case. This baby was born to an 11 year old little girl. YES, an 11 year old in Guatemala. Pfeiffer syndrome is a rare genetic disorder characterized by premature fusion of certain skull bones (craniosynostosis), and abnormally broad and medially deviated thumbs and great toes. Most affected individuals also have an abnormal midface, with protruding eyes and conductive hearing loss. Three forms of Pfeiffer syndrome are recognized, of which types II and III are the more serious. These facial defects would have been recognized with early prenatal care and ultrasound that was not available to this girl. Pfeiffer syndrome is an autosomal dominant condition associated with mutations in genes (the fibroblast growth factor receptor-2 (FGFR2) gene and the fibroblast growth factor receptor-1 (FGFR1) gene). #iheartautopsy #mysterydiagnosis #pfeiffersyndrome #genetic #genetics

This little babe was born 4 weeks early. She is currently at children's hospital in the NICU. She is getting ready for her first of many cranial surgeries before she is even 2 weeks old. She is believed to have #pfeiffersyndrome she has a life long journey ahead of her. #preemieoctopus #preemiebaby to read more please visit https://www.gofundme.com/prayers-for-scarlett-caprara

PFEIFFER SYNDROME
Pronunciation: fī′fĕr
Say Hi to Bella
@Regranned from @specialbooksbyspecialkids - Bella is diagnosed with Pfeiffer syndrome, a condition that affects the shape of her skull. She wishes that other children would just say “hi” and accept that inside she’s a normal kid.
Folliow Bella and her family at @illonaillonalona.
________________
Pfeiffer syndrome is a syndrome of craniosynostosis (premature fusion of the cranial sutures) due to mutation in FGFR (fibroblast growth factor receptor) characterized by bulging eyes (proptosis) due to shallow eye sockets, underdevelopment of the midface and broad short thumbs and big toes.

3 Types:

Pfeiffer syndrome type 1 -- The intellect is usually normal. There is moderate to severe underdevelopment (hypoplasia) of the midface, broad and inwardly deviated thumbs and big toes with variable degree of shortening of the digits (brachydactyly). Hydrocephalus and hearing loss may also occur.

Pfeiffer syndrome type 2 -- Developmental delay and mental retardation are common. There is a cloverleaf skull and extreme proptosis. The thumbs, big toes and other digits are as in type 1 but there is also ankylosis (fusion) of the elbows and knees.Other problems may include narrowing or closure of the nasal passages, laryngeal and tracheal malformations, hydrocephalus and seizures.

Pfeiffer syndrome type 3 -- There is a tall short skull (turribrachycephaly). All other features are as in type 2.

The health care of children with Pfeiffer syndrome is often best managed by a multidisciplinary team which may include a neurosurgeon, plastic surgeon, otolaryngologist, dentist, audiologist, speech pathologist, pediatrician, and geneticist. A dozen or more surgeries may be required over a lifetime. The first surgery is usually to relieve the premature fusion of the cranial sutures. Hydrocephalus, upper airway obstruction, and exposure of the cornea by the proptosis may require shunting, tracheostomy, and surgical eyelid closure, respectively.

The prognosis (outlook) is most favorable with Pfeiffer syndrome type 1. Types 2 and 3 carry an increased risk of early death.

#healthentertainment #healthawareness #Pfeiffersyndrome

Giving me the serious business. #pfeiffersyndrome #pfeifferstrong #pfeifferpfighter

Veckans läkarbesök avklarat.. 11 månader och 5,4 kg duger inte. Nu ska det bli bättre fart på magen med diverse medikament och förhoppningsvis antar hon min rondör inom kort. #pfeiffersyndrome

MOST RECENT

Veckans läkarbesök avklarat.. 11 månader och 5,4 kg duger inte. Nu ska det bli bättre fart på magen med diverse medikament och förhoppningsvis antar hon min rondör inom kort. #pfeiffersyndrome

“You can’t blend in if you were born to stand out.” ⭐️⭐️ Watching this movie really hit home for my family and I because we deal with it every single day and will probably deal with it for a long time. I can only hope that people who watch this movie get a better understanding of what it means to be kind, loving, and seeing the beauty in EVERYONE. Treating everyone as we’d like to be treated. Embracing differences because we ourselves are very unique as well. I feel so blessed to have a niece like Ryley bc i know our friends and family surround her with so much love and happiness. And I hope when she gets older, she doesn’t see herself as “different”, but as a beautiful person inside and out and to be able to teach that to others as well. I Love you my best friend❤️ #tialovesyou #pfeiffersyndrome #myhappiness #mybean

Muskegon's very own "Wonder" girl Avery Cooper on her own red carpet ✨ .
.
.
#PfeifferSyndrome #superstar #wonder #wondergirl #choosekind

#thxbirthcontrol for letting my decide I don’t want a child who may be born with #pfeiffersyndrome if I can help it. For letting me live and be a women without worry of unwanted pregnancy. For letting me work and do what I love and save money for all the things I want to do. 💙💊👸🏼

One thing I love about Amelia’s Syndrome is that it’s brought so many amazing friends into our lives! 💜 #apertsyndrome #pfeiffersyndrome #ameliakatja @kelly.eggleston @averysstory #bestplaydate

今日は、頭蓋骨早期癒合症のお子さんを育てている4家族でランチ会!
10万人に一人と言われているアペールちゃんとファイファーちゃんが4人も集まってくれました😄
情報交換したり、あるあるネタで盛り上がったり!!
楽しい時間は、あっという間でした。
#apertsyndrome #pfeiffersyndrome
#crouzonsyndrome#apcfamilymeeting
#どんな子も地球の子#めざせボーダーレスな子育て支援
#kiki #toco

Pretty sure baseball runs in Carson’s blood. And his obstacles only make him fight harder. His last game of the season was this past weekend, and he’s already looking forward to Spring Ball. Loved cheering him on as he played this Fall though. He had a great season! He was so happy to pitch in every single game!! And he rocked the mound every time because he LOVES it so much!#pfeiffersyndrome #hearingloss #fusededelbows #fusedupperspine #shunt #hydrocephalus #chiarimalformation #14surgeries #craniofacial #seattlechildrenshospital #pitcher #littleleague #fallball #thanksliving #inspires

Honey and Brother Badger was super excited to shop for Operation Christmas Child thanks to a surprise check in the mail. #onemillionactsofgood #goodgoesround #reallifesanta #pfeiffersyndrome #moresharesfewerstares #chewskind #CHOOSEKIND #hustlekindness

Today was a BIG day for our 11 year old son! Back in July of 2016 he had surgery #14... His surgeon removed bone from the back of his neck to make space and increase the flow of his cervical spinal fluid. He has what is called a Chiari malformation. Basically, everything is squished at the top of his spine and base of his skull which is what caused fluid to collect and grow cysts on the inside of his spinal cord. Before the surgery, they were measuring 9mm. Post-op, the space created at the top of his spine was proving to be successful in shrinking the cysts down to 5mm. And today, almost 14 months later, we are seeing a further decrease in size. Now they only measure 4mm. We are so thankful! #prayersanswered #inspires #thanksliving #chiarimalformation #pfeiffersyndrome #craniofacial #syrinx #carsonstrong

Wonderful Wednesday! A generous member of the badger family send a HUGE box of personal care items for Operation Christmas Child today and the kids were STOKED! Brother Badger thought the rainbow nail clipper were amazing. Honey Badger liked the nail kit best. Thank you for helping them help others. They are super excited. #chewskind #CHOOSEKIND #hustlekindness #pfeiffersyndrome #operationchristmaschild

Not a great way to start her day 😢🐞#pfeiffersyndrome #apertsyndrome #mallorysway #sherockspfeiffersyndrome

The kiddos are going to start stuffing shoeboxes for Operation Christmas Child in the next couple weeks. If you would like to help fill their boxes, we are still looking for great deals on nail clippers, brightly colored bandaids, combs, brushes, and chapstick. Any other donations are also welcomed. The only thing we don’t need is more shoeboxes thanks to great friends. You can learn more at https://www.samaritanspurse.org/operation-christmas-child/what-goes-in-my-shoebox-suggestions/ #moresharesfewerstares #pfeiffersyndrome #hustlekindness #chewskind #CHOOSEKIND #operationchristmaschild #sibsmatter

Most Popular Instagram Hashtags