Tay-Sachs: 2 Days In The Life Of Rachaeli Fier

http://www.projectshui.com
Rachaeli is an 8 1/2 year old girl with Tay-Sachs disease. Six years ago, a photographer from the Hide and Seek Foundation, http://www.hideandseek.org/ , spent two days with Rachaeli's family taking the pictures in this video.

The song is Aneini by the group Lev Tahor, http://www.levtahor.com . The lyrics in English mean the following: Answer me G-d, for good is your kindness; according to your abundance of Your mercy turn to me. Don't hide Your face from Your servant; for I am distressed, answer me quickly. Composed by Gadi Fuchs.

Included in this video:
Rachaeli stretching, doing physical therapy, bathing in her bath chair, getting nebulizer/breathing treatments, using the Vest airway clearance system (a vibrating vest for chest physical therapy), going to the GI Lab to get her G-tube button replaced (a genie button), being taken care of by her nurse, getting suctioned, wearing AFOs (orthotics on feet), sitting in a Kid Kart, receiving a feeding through her G-tube.

Note: This is the "clean" version of '2 Days in the Life..." That is, Rachaeli's mother had showered, the house had been tidied, and Rachaeli was having two very stable days. On the days the photos were taken, there was no need for oxygen, antibiotics, disimpaction, heating pads, cooling pads, manual chest physical therapy, extra seizure medicine, or postural drainage.

Category:

People & Blogs

Tags:

• tay-sachs
• genetic diseases
• hide and seek foundation
• lysosomal diseases
• lev tabor
• tay sachs treatments
• physical therapy
• Vest Airway clearance
• oral suctioning
• Kid Kart
• feeding tube
• genie button

[MrAzadrex]

My Ezra has Sandhoff, I'm so sorry for your loss.I cried for days when I heard of her passing.

[titan8300]

How long ago was this video shot? Tay Sachs is so sad.

[Tait2468]

@TheFunPop It's GI (for gastro intestinal)

[TheFunPop]

hey um... at 1:36, is it Gl or G1? caus im doing a project bout the day in the life of someone w/ this disease = so...

[silentobservor]

Precious little girl...what a beautiful life she is.