Although this little girl and Harper have different conditions the symptoms and concerns are still very much the same. Rett Syndrome and CDKL5 are very closely related. We share many of the same fears as this family in the video. We remain very hopeful that someday Harper will be blessed enough to reach the milestones of sitting and walking like the girl featured in this video. Many CDKL5 children never get there. With intense therapy it is possible for Harper.
We created Hope4Harper to help us get her there. Harper's therapy and expenses are as follows:
Physical, Occupational and Vision therapy:
Covered by insurance
Flash Card Therapy:
$65 per session (Harper receives one per week) this builds communication and vision skills
Yoga Therapy for special needs children:
$111 per month (Harper receives one session per week) suggested in an effort to build muscle tone
Aquatic Therapy for special needs children:
$150 per session (Harper will receive one per week) suggested in an effort to build muscle tone
Total monthly therapy only expenses to date not included the ABM sessions which require travel:
$971 per month (again this does not include her very valuable Anat Baniel Method Treatments)Anat Baniel Method Therapy without travel expenses:
Austin sessions $140 per session (Harper receives 5 in one weekend visit)
California sessions $250 per session (Harper receives 14 in a 7 day visit when Austin is not
available)
Thank you again to everyone for helping us cover Harper's therapy and other medical expenses such as the ketogentic diet trial we are using in combination with her current medication in an effort to stop her daily seizures. So far we have not been able to find the right formula mixture for this diet to be successful. We have a few more options to try and will keep you posted on there successfulness.
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