Weather during summer in the place where she stays, South Carolina, is quite unbearable for this little girl and she cannot stay outside for more than 20 minutes.
The family has built a swimming pool in the backyard so that she can enjoy the summer outside by staying in the pool.
This little kid needs to consume nearly 33 pills a day. She eats only through a feeding tube. She also needs to apply eye drops every hour to prevent blindness. A growth hormone injection is a must for her daily.
Amid all this, her parents are counting their blessings that their kid was diagnosed early enough with this condition. She will also require a kidney transplant during her teens.